3: Hospice Care Philosophy of Care

Chapter 5: Hospice Care: The Dignified Way to Live Before You Die

Definition of Palliative/Hospice Care

History of Hospice Care

Features of Hospice Care

Types of Hospice Care

The Hospice Care Team

Definition of Palliative/Hospice Care

The words 'palliative' and 'hospice' mean exactly the same thing. I use them both.

The hospice philosophy of care is about trying to meet the physical, emotional, spiritual and information needs of people with a terminal or life-threatening illness and their families. Hospice care is as much a philosophy of providing care as it is a specific program or an institution.

The hospice philosophy of care assumes that everyone ­ patients, family members and friends, and professional and volunteer caregivers ­ all have knowledge and skills to give each other and all need to receive support as well. Although the emphasis is on meeting the patient's and family's needs, there is an assumption that doctors, nurses, social workers, chaplains, and all other professional and volunteer caregivers also need support. This philosophy of mutual support is one of the distinguishing features of hospice care as apart from acute care.

In today's technological society palliative/hospice care is actually a return to a more humane, patient-oriented philosophy and system of care that encourages people with a terminal or life-threatening illness, their families and caregivers to work together and, where possible, permits a person to die at home.

When someone hears a physician say: "There is nothing more we can do," it is frightening. In fact, much can still be done to make someone's life rich and fulfilling, pain free and productive. When curing is no longer possible, caring is. About 400 B.C., Plato wrote that the mind and the body are one and should not be treated separately. In modern hospice care, the primary goal is to work with a patient and family in the four areas of physical, emotional, spiritual and informational care.

Dr. Paul Henteleff, a past medical director of the St. Boniface Palliative Care Unit in Winnipeg, Manitoba, and the first president of The Canada Palliative Care Association believes that dying decently is what we should be aiming at. People should feel wanted. People should not be misled by false hope. People should have the pain and symptom control they need. People should not be diverted from making the best possible use of their life whatever that means to them.

Dr. Dorothy C. H. Ley, was a pioneer in the Canadian hospice movement. She agreed that hospice care is a philosophy rather than a program or service. The hospice care philosophy has been used in small and large communities alike. In fact, hospice care often develops naturally in communities where citizens have long worked together with local medical professionals, family, neighbors and fellow church members to provide total care for people who have a terminal or life-threatening illness. Urban centers are beginning to establish hospice programs drawing on community resources and interest to benefit patients and their families.

The hospice movement has expanded rapidly in Canada since the mid 1970s. Originally it was mostly for cancer patients. Hospice is slowly beginning to help people with other terminal or life-threatening illnesses. More services are needed, however, as many Canadians do not have access to the hospice philosophy of care.

History of Hospice Care

The roots of hospice care go back to five ancient traditions of people caring for each other. These traditions date back thousands of years. At the most primitive level, people removed vermin from each other's hair and bodies and helped each other with grooming, scratching, and other basic hygiene. They would teach each other knowledge and skills, especially their young ones. They tried to heal or tend to the sick, injured and wounded even though few of them got old. Over time, and at a deeper level of caring, they shared each other's possessions especially with the poor within their group. They would also show hospitality to strangers, travelers, wanderers and pilgrims as long as these people were no threat to them. Ancient trading routes developed along these lines of caring communities.

Formal hospices were places of shelter provided by religious orders to pilgrims on their way to the Holy Land during the Middle Ages in Europe. Travelers found food, refuge and spiritual encouragement to prepare them for their continuing journey. These hospices were modeled on various Greek and Roman institutions.

In the 19th century, Mary Aikenhead opened the first modern hospice in Dublin. She founded an order of nuns called the Irish Sisters of Charity. These sisters provided various medical and spiritual services including care for people who were dying. She began her order in her own home and coined the name, hospice. She saw death as the beginning of a journey, so her hospice was a place of refuge, just as in the Middle Ages, but for a different kind of journey.

At the turn of the century, the Sisters of Charity opened St. Joseph's Hospice in London. The spread of the modern hospice movement did not begin until Dame Cicely Saunders opened her St. Christopher's Hospice, in 1967, also in London. Dame Saunders worked in England as a nurse, then as a social worker. She met David Tasma, a patient who had a terminal illness, in a London teaching hospital. He was a Polish refugee from Warsaw. They discussed his needs for improved pain control and their ideas for a special kind of physical, emotional and spiritual care. He left her five hundred pounds to help establish such a center after his death.

Dame Saunders left social work to study medicine and trained at St. Joseph's as its first fulltime medical officer. After her training she worked with the community to establish St. Christopher's Hospice. It is the oldest established terminalcare facility to combine teaching and research with patient care. It's early concentration on excellent medical management of pain and symptoms distinguished it from other hospices.

In the United States, millionaire Nathaniel Hawthorne's daughter, Rose, watched her friend, Emma Lazarus, die of cancer. (Emma Lazarus' poem is inscribed on the Statue of Liberty.) Rose Hawthorne founded the order of Dominican nuns, Servants of Relief, and opened a hospice-like home in 1899 in New York City. It wasn't until 1971, that Dr. Sylvia Lack established a modern hospice program in New Haven Connecticut. Dr. Lack studied with Dame Saunders before coming to the United States. She began with a home care program and opened a hospice center in 1978 with the support of the National Cancer Institute.

In Canada, palliative care began in the mid 1970s with units at St. Boniface in Winnipeg and The Royal Victoria Hospital in Montreal. From the experiences at the Royal Victoria Hospital, Dr. Balfour Mount and his team prepared an extensive hospice care manual for professionals.

At about the same time, community-based hospice programs evolved across Canada. These grass root, non-profit organizations were started by concerned community members who wanted their loved ones to live at home until their deaths rather than die in hospitals. Many started with only volunteer help. Some now have paid staff, especially palliative care nurses, to help assess and meet the needs of people living at home with a terminal or life-threatening illness.

There are many ways to provide hospice care but the most important features are the same no matter where the service is provided.

Features of Hospice Care

By definition, hospice care is anti-dogmatic, and constantly strives to adapt to the individual needs of the patients, their families, and of a particular community. The modern philosophy, however, is rooted in Christian, white, middle and upper class society beliefs. To become universal, hospice care will need to become even less dogmatic through multicultural and multi-faith approaches to care.

The four areas of concern in hospice care are the physical, emotional, spiritual and information needs of the patient and, where applicable, those of the family. Hospice care can be provided in someone's home or in institutional settings. What hospice programs offer to patients and their families is very dependent on where the care is given. Some aspects of care, however, are the same no matter where the person lives.

By emotional care, I include having the patient and family involved in decision making, in listening to their feelings and needs and showing them respect and compassion. Emotional care includes providing opportunities for patients to express themselves in valued, creative ways. They may do that through art, music, crafts, or games they enjoy playing. These opportunities are therapeutic without, necessarily, involving 'therapy'. Emotional care also looks at how people of different ages within a family deal with dying and death. Grandparents have different experiences with dying and death than their children and grandchildren. Ideally, this mix of experiences can help family members cope better with their emotional ups and downs. When this is not so, outside help may be needed. Emotional care in hospice also looks at the needs of professional and volunteer caregivers.

The spiritual roots of hospice come from the concept of 'the hidden Christ'. In medieval times, poor travelers were treated lavishly by hospice members because there was the underlying assumption that any visitor could be the second coming of Christ. Therefore, all visitors were treated royally and without cost. Modern spiritual care refers more to the patient and family's personal experiences of suffering and death as well as their concerns regarding life-after-death, their belief or disbelief in God, and encouraging the inner spiritual strength most people have regardless of any religious affiliation. Spiritual care is available through a chaplain or spiritual leader as well as through the general contact between patients, families and their caregivers. It is up to the patient and family if they wish formal religious guidance and assistance.

The emotional and spiritual care offered to a patient is especially important when the patient has no family or friends nearby. The hospice caregivers are able to offer the support, understanding and compassion to patients at home or in an institution that patients have not traditionally received in our modern medical systems. The added comradeship possible, for example, within a hospital palliative care program with other patients, and the opportunity to share thoughts and feelings with them, makes hospice care a vital service to these patients. Another example is people with AIDS who have, until recently, not received the unconditional support and compassion of the community. AIDS hospice and home care programs have been developed in various North American cities to meet the needs of people with AIDS, while also educating the public about the illness and the goals of hospice care, in general.

The goal of hospice care is not to cure a terminal or life-threatening illness but to provide comfort. Hospice care is not about prolonging life heroically when someone is near death. Surgical procedures are recommended only if they can help a patient's physical comfort. Few tests are carried out unless they, too, can help improve comfort. The primary concern is the comfort and caring support of patients and their family. Patients early on in their active treatment can also benefit from hospice's excellent pain and symptom control regardless of the person's disease or prognosis. Waiting until pain becomes unbearable or until a person is labeled a 'palliative care patient' makes pain control more difficult.

The most common concern of patients with a terminal or life-threatening illness is their fear of pain and uncomfortable symptoms. The first priority of hospice care, therefore, is pain and symptom control. When pain is controlled, the patient's dignity is easier to maintain, the person can think more clearly and concentrate on their emotional, spiritual and information needs. Painkillers (analgesics) should be given routinely and in sufficient quantities. At the same time, medication is given to offset some of the side effects of painkillers while giving the patient maximum mental alertness. Patients often have a noticeable period of relief after their pain is managed. The patient and family may assume that the person is actually getting healthier or is cured. This is not true. Effective pain and symptom control help people feel better but do not cure a disease.

Once pain and other symptoms of an illness are under control the patient and family have time to consider their own emotional and spiritual needs. A major concern of patients and families at this point is how a patient dies. According to Dr. Cicely Saunders, proper pain and symptom control in cancer patients may help patients to be alert and communicative until a short time before death. They often slip into unconsciousness and die in the way most of us would like, in their sleep.

When we talk about emotional and spiritual care it is not an idealistic vision of a perfect world. There are very specific ways to help patients and families emotionally and spiritually. Emotional needs of people dying, their family and caregivers are described more fully in the chapter on emotional needs. Generally speaking, emotional support includes listening unconditionally to peoples' needs. This listening can be done by all the caregivers and includes having the patient and family actively involved in making decisions.

Often when patients are prevented from making decisions, no matter how large or small, they become very anxious, irritable, angry or unsure of themselves. They stop trusting what people close to them say. Their increased negative emotions add to their physical discomfort. Their physical discomfort adds to increased negative emotions and the vicious circle may never end. Hospice care is a way to change this circle into a positive cycle of total physical, emotional and spiritual care. Earlier access to hospice care may help reduce some of this anxiety, harm and trauma and provide information to help patients make further treatment decisions.

In institutional settings, rules are kept to a minimum. Families are encouraged to bring special meals to the person dying and eat together as a family. Cultural customs are important and respected. Family contact is crucial, so the family is encouraged to participate actively in their loved one's care.

When the patient's condition permits, frequent back rubs, walks, recreational activities, relaxation exercises, music, art and visits by friends are all encouraged. There are no specific visiting hours. Pets are sometimes allowed to visit. People are encouraged to bring their own photos, plants and other things to make them feel more at home. Patients have choices in their meals including home cooked food. They are allowed to smoke or have an alcoholic drink and are encouraged to do things they would normally enjoy doing.

Questions are answered honestly and the caregivers are respectful of a person's privacy and decisions. What we might call 'small things' are encouraged. For example, caregivers refer to their patients as Mr. or Mrs. Smith rather than 'dear,' or 'honey,' unless the patient enjoys such terms of endearment. Respect and personal care is very important.

When someone dies, hospice care for the family does not end. Many hospice programs have a bereavement component that encourages continued communication with the family during their time of grief.

The caregivers' role in bereavement may begin with a letter or card signed by all the staff and/or volunteers and sent to the family about three weeks after someone's death. There may be a followup call to see if the family wants to come in and visit or to have a hospice person visit them at home. The family may choose to join a support group with other grieving families in order to share their feelings, anger and hopes. Respect for the family wishes is very important so the caregivers always leave a door open, day or night, for someone to call in and chat for a bit.

To find out about hospice programs in your community you can check with your doctor, the hospital social work department, hospital discharge planner, or one of the national associations for hospices listed in this book. Be sure to check about costs, if any, and whether your insurance company covers some or all of the costs, and if there are competing services, to ensure that you are choosing the correct one.

Types of Hospice Care

The following is a list of various types of hospice care. Different communities choose different models. A program may incorporate smaller existing programs, coordinate services between various agencies, or the community may choose a specific model better suited to its needs and financial capabilities.

Informal Hospice Care

Coordinated by a person's family and physician who want to care for the patient without formal help from agencies or institutions. They may use a support circle of friends and volunteers to meet the needs of the person who is dying.

Home Care

Goes by various names including 'hospice care without walls' or in Ontario, Community Care Access Centres. Home care is a program through which professional case managers coordinate someone's medical care at home. The managers can bring in whatever professionals, services and equipment that are possible within their service.

Home care is often the key component of any hospice care program. These programs may be affiliated with a specific hospital, hospice unit or coordinated through public health agencies. Sometimes home care is strictly a community response to a need and is coordinated through a volunteer organization. In some communities the home care program is the only hospice care component available. With home care, the patient remains at home until death, rather than in a hospital or nursing home, and is treated by visiting nurses, doctors, therapists, clerics and other caregivers. Principles of pain and symptom control, emotional and spiritual care are followed.

In almost all hospice programs, home care is considered the most important component because people who are dying are usually more comfortable in their own environment. Only in situations when the family and caregivers cannot provide quality care do patients go to the hospital, a hospice care facility or a long-term care facility.

Community Hospices

Organizations, primarily run by volunteers, to meet the needs of people with a terminal or life-threatening illness with no charge for services. The hospice organization may have some paid staff, especially nurses to help volunteers assess the needs of their clients. Community hospices work closely with a patient's family physician, other health care providers, and local home care programs.

Freestanding Hospice Facility

A facility separate from any other institution that provides only hospice care. Patients are often referred by a family physician or by a specialist seeing the patient in a hospital. Depending on the resources of the facility there may be space available in emergency situations. These facilities generally do not have operating rooms, specialized life-support systems or other features of an acute care general hospital. St. Christopher's Hospice in England is the first modern example of a free-standing hospice. There are few freestanding hospices in Canada.

Freestanding Hospital-Affiliated Hospice

A separate building housing a hospice center but affiliated to a specific hospital (often a teaching hospital) such as Casey House in Toronto.

Hospital-Based Palliative Care Unit

A separate hospice unit within a hospital which provides all the services of a freestanding facility except that patients are within easy access of hospital personnel and facilities. Because pre-existing facilities can be restructured, such units are less expensive to begin than a freestanding facility.

Hospital-Based Hospice Team

Rather than a separate unit within the hospital, a hospice team goes to the patients in the various wards within the hospital. The team educates the regular caregivers in pain and symptom control and encourages the emotional and spiritual care of specific patients. Hospitals with limited resources or those wishing to test the hospice program may have only a single person (often a nurse) introducing the program to patients and staff.

Extended Care Services

Hospice programs may also be found in institutions such as nursing homes, long-term care facilities, military hospitals and prisons.

The Hospice Care Team

When people are dying of a terminal or life-threatening illness it is practically impossible for them to do it alone (even if they want to). Hospice care is a philosophy. As such it permits professionals and volunteers to work together to help someone who is ill. Even in communities where there is no official hospice care, neighbors, family physicians, clerics and friends can work together as a team to help someone in need.

I will speak briefly about each potential member of this team. The nature of hospice care means constant improvements and changes so that the hospice care team in your community may include any or all of the following specialties: physicians, nurses, pharmacists, clerics, therapists, dietitians, psychiatrists or psychologists, social workers, homemakers, other home care providers and volunteers. Often members of the hospice team, such as a psychologist or chaplain, are not fulltime. I have listed the most common members of a team first.

Patients, family members, friends and close neighbors are members of the team because they are most intimately involved in the care of the person who is dying on a day-to-day basis. They are probably untrained in what to do and will make honest mistakes in an effort to be most helpful. They require and deserve the knowledge and support of the trained professionals to help make their support all the more practical and meaningful.

Home Care Case Manager assesses a patient's home-care needs and coordinates the services including visiting home nurses, homemakers, and therapists and needed supplies. Home care case managers work for local home care organizations.

Physicians act as medical coordinators of the team. The special nature of hospice care has led to some physicians specializing in this field with emphasis on pain and symptom control and the physical comfort of their patients.

Nurses play a key role in coordinating, teaching and providing hospice care. They help provide the excellent pain and symptom management patients need along with some of the emotional, spiritual, grief and bereavement care for both patients and their families. They may spend the most time answering questions and listening to comments the patient and family have. They are often in the best position to advocate for the highest quality of care possible for the patient and family.

Social Workers are involved in various aspects of hospice care: client advocacy; long-term individual, family and group counseling; crisis intervention; short-term casework; financial planning; pre-admission assessment to help all caregivers look at the whole person; and discharge planning to help people know what community resources are available to them and how to access them. They may also be involved in helping family members deal with age differences, educational and cultural differences, and conflicts.

Client advocacy (representing the patient to other caregivers) is a key role because social workers are able to help people understand and use community resources, find sources of financial aid, and coordinate home care services. As a patient advocate, they can also help resolve differences with other caregivers over the patient's treatment.

Long-term therapy can include discussion with the patient and family to help them with any emotional or communication difficulties they may have. The social worker may also coordinate or participate in bereavement programs for the family after a person has died.

Crisis intervention by a social worker may include helping to resolve problems that are compounded by a person's illness. An example might be helping a patient in a hospice settle a dispute with a landlord over back rent. A social worker may often offer help in cases where the patient has no family nearby or in cases where the family is unaware of ways to resolve various problems.

Short-term counseling may be one-to-five interviews with the patient and/or family talking about their questions and concerns that have not been discussed with other members of the hospice care team. The social worker can help assess any problems and help people plan and evaluate any follow-up help.

Pharmacists play an important role in recommending medications and educating physicians, nurses, other caregivers, patients and families about the appropriate use of medications. Pharmacists can explain: a) possible side effects of each medication, b) effects of mixing various medications together, and c) the effects of food, liquids and complementary therapies on specific medications.

Homemakers/Personal Support Workers may come from either a commercial or government agency. Homemakers can provide day-to-day services such as preparing meals, cleaning your home, doing grocery shopping and running errands. They may be in your home more than any other caregiver so it is important that the patient and family enjoy that person's company. However, it is important to remember that homemakers are not nurses and cannot be expected to provide medical care.

Volunteers are very important to an effective hospice care program. Their expertise and available time mean a great deal to the patients and family. Volunteers may have experienced the loss of a loved one or may be interested in helping people through a very special time of life.

Volunteers make such care possible, especially in smaller communities, by reducing the cost of providing hospice care. The use of volunteers allows fulltime caregivers to concentrate on their specific areas of expertise.

Volunteers generally receive specialized training so that they become expert at listening to people and offering help that the patient and family need and ask for. Volunteers do a lot of home care visits to make sure that the proper services are available and provided. They also act as a patient advocate so that the patient and family never feel alone. Volunteers may come to the family through a hospice program or through the creation of a support circle of family, friends, neighbors, and colleagues.

Chaplain/Clergy Mother Teresa of Calcutta once said of her ministry that it was her role to take one person at a time and love that person for that time. In this way, acts of love and compassion can help a Hindu be a better Hindu, a Christian a better Christian, a Jew a better Jew, a Moslem a better Moslem, a Buddhist a better Buddhist.

Upon request, the hospice chaplain or clergy can help patients, their family and perhaps some of the caregivers. Each patient's preference for spiritual counseling is followed. Patients may ask to speak with their own clerics, to the hospice chaplain or they may choose not to speak to anyone about their spirituality.

The chaplain or clergy often act as an interfaith spiritual leader, spending time listening impartially to the needs and ideas of patients and their families. They also participate in preparation and performing of funeral services if the family wishes. After a patient's death, they may also continue to support the family during their time of grief.

Chaplains and clergy also guide other caregivers in answering spiritual questions. Someone may hesitate to ask a chaplain or clergy about the meaning of life but they might ask a nurse or homemaker.

The Dietitian does a great deal to help provide meals that reduce constipation and other side effects of medication and treatment. Dietitians also encourage patients and families to suggest or supply their own favorite meals such a mom's home-cooked chicken or dad's special cake. People will generally eat more if they can eat the food they are used to.

Dietitians also understand that patients with certain illnesses prefer different types of food or need the food prepared in a different way. They might also make suggestions on how to 'present' the food so that it looks more pleasing especially when the patient doesn't feel like eating.

Occupational Therapists try to strike a balance between home management, self-care and leisure activities by increasing the patient's knowledge and skill to live within a life-threatening situation.

Home management includes homemaking, childcare and parenting. Self-care includes personal hygiene, grooming, feeding, dressing, mobility, and adapting one's disabilities to their present needs. Leisure activities include the patient's personal interests and hobbies for self-expression and amusement.

Physiotherapists For every patient, the primary goal of any therapy is to keep them as independent as possible in their particular circumstances. A physiotherapist is concerned with providing physical and breathing exercises to help a patient remain independent. Exercises include limb movements, improved breathing techniques to minimize the effects of physical exertion, and recreational games. Breathing exercises can prevent pneumonia while muscle exercises prevent muscles from wasting away.

Physiotherapists try to avoid telling patients they cannot do something but rather let the patients decide what they can and cannot do. They can also educate families and nurses in proper physical care. They use simple techniques rather than cumbersome exercise machines.

Art Therapists Art therapy allows people who enjoy art to participate actively in selfexpression. Many artistic forms are possible and this recreational exercise is not meant to 'keep people busy and out of the way' but, rather as an enjoyable and expressive activity. Art is a way to communicate for people who have trouble talking about their needs.

Music Therapists Music therapy can be as simple as providing patients with their favorite music to listen to. Music soothes and comforts people and can raise someone's pain threshold. Music therapy may also include active participation in playing or writing music and songs, listening to music with people who share your taste or listening to a live performance. Music therapists have an understanding of the physiological and psychological effects of music on people.

Art and music have always been therapeutic for people. One does not need a therapist to enjoy the benefits of any of the creative arts. The therapists, however, can help to enhance a patient's own appreciation of the arts and meet some of their physical, emotional and spiritual needs.

Psychiatrists and/or Psychologists help patients, family and other caregivers cope with different situations and help them accept what is going on. They usually let the patient take the lead, much as the clerics do. If the patient, family or other caregivers do not wish to see the psychiatrist or psychologist then their wishes are respected. Both of these professionals can help identify mental conditions that might benefit from extra help including clinical depression, traumatic events from a patient's past that they want to deal with or specific counseling for anxiety about death and dying.

The philosophy of hospice care encourages a relaxation of limits around a particular caregiver specialty. It is not uncommon to see an occupational therapist listening to patients discuss the pain they used to have, a physician fluffing pillows, a patient comparing her religious beliefs with that of a nurse, or the chaplain helping a patient with his meal.

There are regular meetings of the hospice care team to coordinate the overall activities of the team, during which, each team member presents a specific patient's needs or concerns. This open communication ideally keeps everyone on the team informed about each patient and family. Coordinating care may be more difficult when many different agencies are involved. More effort is being made across Canada to coordinate care more fully and easily between hospice care providers at different agencies and institutions.

Of course, a patient's chart is also used to write in specific information about the patient's physical, emotional, spiritual and information needs. These charts are used by the different team members on different shifts to keep up-to-date on what the patient and family may need. These charts may also provide information on the patient's thoughts and feelings about her care, fears and hopes. Patients often have access to these charts and are encouraged to write in them to share their own ideas and feelings directly with the caregivers. Sometimes, a separate communication book is left by the bedside for anyone to write in to improve communication between the various caregivers and the patient.

Another important team member has sometimes been called the patient advocate or asker. This person can be any family member or friend who is with the patient. A more specific advocate role may be played by a specific family member or friend who acts as spokesperson for the patient who may be unable or unwilling to communicate with the caregivers. This person may also coordinate a support circle (see Chapter 19) to help the patient.

The advocate or asker, working with the caregivers, makes sure that:

The patient is safe, comfortable, aware of the decisions needing to be made and always in touch with loved ones.

The patient is fed the prescribed food when they are best able to eat it.

The patient's medication and treatment is accurate and given at the proper times.

Any tests or examinations have been approved.

The physician and other caregivers communicate with her about all matters relating to the patient.

The patient is given a sense of control and respect.

The modern hospice movement is still relatively young and, therefore, constantly changing. From the patient/family point of view, it is important that you find out what services are available, what they cost, if anything, and whether or not they meet your needs.

You now have an understanding of the philosophy of hospice care and can use that knowledge to help hospice care in your community. When people work together, the end result is an overall improvement of services for patients and families and increased professional satisfaction for the caregivers.

Chapter 6

Patient And Family

Relationships with Professional and Volunteer Caregivers

Understanding the Physician

Understanding Patients and Their Families

What Physicians Can Learn from Their Patients

Some Do's and Don'ts of Improved Communication

Resolving Communication Problems

This book concentrates on how people can work together for the improved total care of someone who has a terminal or life-threatening illness. A key relationship during this period is the one between the patient-family and their various physicians. While this chapter concentrates on relationships with physicians, many of the points are also valid for relationships with other caregivers. Mutual respect and open communication are just as important with nurses, clerics, therapists, and other caregivers as with a physician.

The medical world is going through a rapid and tremendous change. There are increased pressures on caregivers including the added responsibilities to other medical personnel, intervention by governments and insurance bodies, limitations on payment for consultations, telephone advice and sometimes the type of service caregivers are allowed to give. The increased demands by patients, families and consumer organizations compared to the relatively slow response of the health care system cause even more tension.

The change in the health care system requires everyone to recognize the financial and resource limitations at this time. Limited hospice programs, medical services, long waiting periods, and caregiver time all affect the kind of care a patient can expect. Understanding these limitations will help people to have realistic expectations of the type of care available to them while also encouraging them to find ways to adapt to the specific limitations of their case.

There may a natural apprehension by the patient and family toward physicians, especially doctors they do not have a comfortable long-term relationship with. Most of them are afraid of their illness but are forced by circumstances to rely on the expertise and advice of people they may not know. Added to this anxiety is the reality that medicine has not cured the patient of a terminal or life-threatening illness. They may have lost trust in the 'system'.

In the past few years, there has been more awareness that when the patient and family work together with their physicians, everyone benefits. Open and honest communication relieves the patient and families' anxiety, while the physicians feel more job satisfaction and less personal stress. When such communication does not happen, it is up to the physician and family to provide the energy, patience and wisdom to improve the situation. Patients may be too mentally and physically drained to give extra effort to improve communication.

Understanding the Physician

Caregivers endure stresses that everyone can help diminish by working together. The professional stresses of a physician include:

Heavy workload (it isn't enough to be a physician these days; you must also be a business person, a politician, and a bureaucrat).

Deciding how much patients should know about their serious illness if the patient does not ask for more details themselves. Although most patients prefer to know the truth about their illness, there are patients who do not want the physician to tell them the full truth. This could be for cultural or personal reasons. They may prefer that the physician speak with a spouse, parent or adult child instead of to them.

The increasing paperwork requirements of governments and insurance companies leaves;

Little time to learn new treatments and methods.

Little time to deal with personal stress.

Increasing numbers of lawsuits.

A decreased public respect for the medical profession in general.

A common complaint against physicians is that they are uncommunicative. Dr. Peter Hanson, the author of The Joy of Stress, explains why some physicians may appear uncommunicative. Physicians, especially specialists, have often gone directly from high school, to university, then to medical school, and finally specialty training. They have limited experience or training in communication skills with people outside the medical community, especially people from different cultural and economic backgrounds.

Many graduates from medical schools have either a domineering, paternalistic personality or an analytic, detail-oriented personality. These personality types can make communication difficult. Some of these physicians are basically quite shy and do not realize that they are being uncommunicative. With diplomacy and persistence patients and families can help physicians become more communicative in today's chaotic, rapidly changing health care system. However, during a time of terminal or life-threatening illness, the patients and families probably do not have the skills, energy or patience to 'draw out' the physician. It is up to physicians and all health-care providers to acquire the necessary communication skills needed to help patients and families through such fearful and uncertain times.

Many physicians are uncomfortable with patients who are dying. After all, medical training is designed to cure patients. Medical training has indirectly seen death as a failure of modern medicine. Dealing with the emotional stresses of patients dying is not part of most medical training. Medical ethics about life and death decisions are only now offered in some medical schools. If physicians are uncomfortable talking about death and dying they should tell their patients. Patients may be able to help their physicians understand what it is like to be dying. At the same time, patients can feel useful by helping their doctors. If physicians remain uncomfortable, they must refer their patients to someone who can meet some of their emotional and spiritual needs. Of course, patients or their families may also look for a different physician who can meet their specific needs.

Some eminent physicians have written about physician-patient relationships. Sir William Osler was a 19th-century Canadian physician and scholar. He began the Internal Medicine department at Johns Hopkins Hospital, helped begin the Rockefeller Foundation and taught students like the Mayo brothers (of Mayo Clinic fame). Sir William believed that it is more important to know what type of patient has a disease rather than what type of disease a patient has. He gave his patients both medication and lots of optimism. That optimism is just as important to someone who is dying. It takes the form of encouraging a full life until one dies and helping teach grieving families learn from the lessons of their recent loss.

Norman Cousins in his book The Anatomy of an Illness describes a visit he had with Dr. Albert Schweitzer in Africa. Schweitzer explained his philosophy of medical practice. He believed that each person carries his own doctor inside of him. He goes to a physician because he does not recognize his own strength. A physician's greatest asset is his ability to bring out the doctor within his patients. By helping patients gain a sense of personal control over their lives, physicians are also achieving a professional satisfaction that they are making a positive difference in the lives of their patients.

Understanding Patients and Their Families

Total care looks at a patient's physical, emotional, spiritual and information needs. Studies show that people who have a terminal or life-threatening illness want many of the same things including:

To be relatively pain free;

To be alert and aware of what is happening to them;

To have the companionship of their family and friends;

To be accepted as the person they have always been;

To maintain their individuality and inherent dignity;

Not to die alone (this is especially true in cases where people, most often women, have already lost their spouse);

Not to be a burden to their family and caregivers;

To have familiar things around them: photos, plants, music, flowers, favorite food, and pets;

To be cared for and remembered with love and respect; and

To have their family continue living and loving after their death.

Patients and families suffer most when communication with their physician is poor and the relationship is uncooperative. Patients need a spokesperson, advocate if you like, who has the energy, commitment and time to encourage, even demand, improved communication with the physician. It may not be easy to find such an advocate because of many people's fear of anything medical.

Trouble with effective communication can happen if the patient 'doesn't want to bother the doctor' with information, symptoms, pain or concerns. This deference to physicians was taught to older people and many of them find it hard to be assertive and expect an open and honest communication with their doctor. Other communication problems may happen if there are family problems (e.g., children arguing over what is best for 'mom' or 'dad'). If the patient has no one nearby for support, medical appointments and conversations become even more physically and mentally exhausting. These difficulties can be partially overcome if everyone understands that the difficulties must be discussed and resolved in order to develop open communication and real cooperation. The people with the most energy and experience must make sure that difficulties are overcome for the sake of the patient and family.

There are, quite naturally, patients who have a difficult time adjusting to a terminal or life-threatening illness. They may fight their illness or completely submit to it. They may communicate very little with their families or not cooperate with their caregivers. These are difficult times for everyone involved and require a continued effort by the family and caregivers to meet the individual needs of the patient. People need a sense of control that comes only from making decisions, even if they are considered wrong. While you cannot force patients to agree to all the changes going on in their lives you cannot stand by as if the consequences of their decisions do not affect you personally. Patients need to be told what the consequences of their actions are and how they affect the family and other caregivers. Sometimes the situation will improve for everyone concerned but, realistically, some people can never communicate or cooperate enough so they can live fully until their deaths. It is immensely frustrating to watch someone make decisions that you strongly believe diminishes the fullness of their remaining life. They likely have frustrated you in similar ways over many years. We wish it could be different but there is often not enough time to resolve all the problems someone has.

Language barriers prevent health care providers from completely understanding their patients and the families. Some programs have translators and others use the ATT telephone company's instant translation telephone service. Whenever one uses a translator, however, you must recognize that the person may not be providing literal translations and may try to summarize what you have said. There will be errors. For matters of critical importance, it is necessary to repeat the conversation using different words to ensure that the message is clear and accurate. Make sure that using an inappropriate translator does not upset cultural norms. For example, a young male translator for an elderly female with gynecological problems may be very uncomfortable or ineffective.

When a family member translates, it is important to accurately translate rather than choose what to translate.

What Physicians Can Learn from Their Patients

There are many things physicians can learn from their patients, especially those who are dying, and from their families. Professional development programs also help physicians become more comfortable with their patients deaths as well as their own deaths. Physicians can learn from their patients:

Facts about their condition. This seems obvious but some symptoms are not adequately addressed by the physician because the patient does not talk about new symptoms, there are time constraints or the physician or patient do not know enough about proper pain and symptom control. Physicians must ask enough questions to get at the answers and must ask the right kind of questions. Taking case histories is one of a physician's greatest skills and we can expect them to do it well.

New treatments that patients have read about in a popular magazine or seen on a television program that the physician has not investigated. Admittedly, some of these treatments are not proven but discussing them with patients help to get them more actively involved in their treatment. That sense of control improves a patient's self-image and decreases their anxiety.

Patients are the only people involved in every medical appointment, test and treatment. They were there for every pain, symptom, test and operation. They can, and should be asked, to offer vital feedback on their present treatments, feelings and fears.

Patients, with the physician's encouragement, can express their needs and, therefore, help the physician in determining further treatment.

Patients remind physicians of what it means to be human. Many of our wisest physicians have learned their wisdom at the bedside of their dying patients.

Some Do's and Don'ts of Improved


From the physician and other caregivers' points of view there are proven techniques that patients and families can use to improve their relationship.

Some Patient and Family Do's

Know your caregivers' names and help them to remember yours.

Communicate with them about your physical and emotional needs and feelings. Speak openly about your concerns and fears and ask your physician if she can recommend someone else who can give practical information to you about what is happening, e.g., pharmacists, social workers, nurses, and health information organizations. Some books, videos or Web sites might also help you.

Cooperate fully once a decision on treatment is mutually decided. If you have ongoing concerns, speak to other members of the hospice team.

Write down the important questions to ask (usually in groups of three) and have a family member or friend with you to record the answers.

Respect the caregiver's time while expecting the same in return.

Ask concise questions that can be answered in a few minutes. Questions like "Why did this happen to me?" require more time and thought. Ask for extra time with a hospice team member to look at such important questions of life's meaning, self-worth, and spirituality.

Offer a time limit for discussion (e.g., 11-12 minutes) and stick to it. In this way you build up a trusting relationship with the caregivers and they know you respect their time.

If you have a large family, choose a family representative and let the hospice team know who is picked and how to get hold of them. Ask the family representative to be with the patient when the doctor, nurse or social worker provide information or ask for decisions.

Encourage family meetings with the doctor, primary nurse or social worker to understand what is happening now and what might happen in the future.

Ask the hospital or hospice to bring in the discharge planner (person who helps you get community services once you leave the hospital) early in the discussion rather than at the last minute. Discharge from a facility into your home should go as smoothly as possible to reduce anxiety and encourage a clean transfer over to community resources. Patients have little control over how they leave a facility and what services are waiting for them. A call to the local home care program by the patient's family or advocate might help the transition by making sure that all the necessary services are in place when the person gets home.

Some Don'ts

Do not ignore medical instructions after a mutual medical decision has been made. If you ignore treatment decisions, you must let your physician know.

Do not ask too many questions, over and over again, (it is better to record the physician's answers).

Do not bring up questions about minor ailments of other family members and friends in hope of free medical advice. If your family and friends have significant difficulty dealing with your illness, then it is good to ask your physician or other hospice care team members for help.

Do not keep telephoning with questions that are better answered by other experts like a nurse, pharmacist or therapist.

Do not wait to communicate new pains or negative symptoms until they have become serious problems.

Do not forget to communicate emotional needs.

Do not get a second medical opinion without telling the principal physician unless your principal physician is uncooperative. Also consider the extra emotional and financial burdens involved in getting a second opinion to make sure it is worth the cost to you.

Do not follow other medical or complementary therapies without consulting the principal physician because the different therapies may conflict. Although one's cultural or personal beliefs may discourage such open discussion of alternatives, it is important that you do nothing that makes the patient more ill.

Do not forget to treat the caregivers with respect or concern.

Some patients choose not to follow the above suggestions and, in effect, choose not to communicate and cooperate. Whether we agree with their decisions or not, it is their decision and they must be respected (unless they injure someone else).

The Differences Between Family Physicians and Specialists

Your family physician is responsible for your initial care and diagnosis and for follow-up after treatment by specialists. Some are able to go to the hospital and speak on your behalf with their colleagues and others are not depending on the rules within your health care community.

Your specialist(s) are responsible for the diagnosis and treatment of specific illnesses or conditions. When you have more than one condition or illness, you will have several specialists who may, or may not, talk to each other about your care.

Specialists plan your treatment and family physicians help explain and monitor treatment and send you back to specialist(s) for further care, if necessary.

For both types of physicians you will have initial appointments of about 15-30 minutes and then follow-up appointments of about 5-6 minutes. This time is valuable so use it well. You need to write out your questions and concerns and have a family member or friend come with you to write down the answers during the appointment.

Some Tips When Dealing With Specialists

Bring a summary of your medical history with you to each appointment, especially what has happened in the last year.

Bring your drugs with you to every appointment so doctor can verify the drug and dosage and see what other physicians have prescribed since last you met.

Ask your specialist for either written material or references for where you can get more answers to your concerns and questions. For example, if you have recently been diagnosed with diabetes, your specialist cannot explain everything about the condition in a short appointment but can provide you with written material, perhaps even a video or audiotape with common information you will need to know or refer you to a specific patient information clinic. Once you know more about your condition, you can discuss specific concerns not answered in the general information.

It may be hard to reach your specialist when you are in the middle of treatment. Here are some tips:

If you are in hospital, ask the charge nurse to contact your specialist for you or ask to speak to the physician whose name in on your wristband who is responsible for coordinating your care while you are in the hospital. You may also ask the charge nurse or specialist when they are usually at the hospital so that you can contact them at that time rather than when they have office hours.

If you are at home, ask the nurse/receptionist in the office to have the specialist call you. Many specialists do not mind talking to you once a day during a particularly difficult time for you but more than that is too difficult for them to manage. You should only call them when they are the only person who can help (versus talking with a nurse, home care case manager, social worker, pharmacist, physiotherapist, etc.).

Have only one family member act as the family's spokesperson so that the physician does not have to give the same answers to each family member. Ideally this person is flexible enough to be at the hospital when the physician has rounds and who has a bit of understanding of health care.

Arrange for a family meeting with the specialist (or specialists if more are involved in the care), responsible nurses and other professionals to deal with unanswered concerns and questions. The hospital social worker may coordinate such a meeting.

If you have concerns, write them out for the charge nurse or office nurse/receptionist so that the physician can priories their calls. You can imagine that many people want to speak with the specialist so they have to decide who gets called first. They often make their calls at the end of their office hours. Also leave them the times of day when you are easiest to reach and the telephone number.

Some physicians will now give out their e-mail address so questions can be answered by e-mail. This is particularly helpful for factual type questions like "When should I be taking these various drugs during the day and do I take them with food or not?"

It is not helpful to show up to an appointment with a large pile of research you have done at the library or on the Internet. Narrow down your questions and ideas to reasonably fit into the time you have. Many physicians subscribe to their own Internet sources for up-to-date medical information. Ask them to print off relevant sections for you.

Your specialist does not control the resources of the hospital so their operating room time, the tests that need to be done are not always under their control. The more senior the physician, the more control they have over scheduling. However, emergencies and unexpected equipment delays or repairs play a large part in who gets what treatment or test and when.

If your concerns are urgent or your have had difficulty getting hold of your physician, become more assertive and make reasonable demands with deadlines so that the physician understands your urgency. If you cannot be assertive yourself, then ask your family spokesperson to do so. It is a universal truth that people often respond to patients with the greatest need or the loudest demands (the 'squeaky wheel gets the grease'). If you reasonable and assertive, you will have a better chance of having your concerns and needs met.

Resolving Communication Problems

When open communication does not seem possible, there are other options available. When the problem has become serious, bring in the hospital, hospice or community social worker to see if improvements can be made. Other caregivers such as a cleric, nurse, facility's patient advocate representative, or psychologist may also be helpful.

Where the communication cannot be improved, the patient or family can do one or both of the following (although I recognize that during such an emotional time these suggestions are not easy to follow) especially in rural areas where choices may be limited.

Change specialists on the advice of your family physician or another caregiver.

Change hospitals or the service you are using.

If it is the patient or family that is uncooperative, the physician might recommend a different physician or hospital. She must legally continue care until the patient has found a new physician.

Many communication problems are not usually one person's fault. People have different personalities and for whatever reason, some people do not communicate well with each other. If both people recognize the problem and accept the situation, the caregiver can help find someone to replace him.

In hospice care, both the patient and the family receive support. A physician may find it easier to speak to a single member of the family rather than the whole family. Recognizing that the patient's comfort is the physician's first concern, the family can arrange to choose a member to act as spokesperson and minimize the time a physician needs to spend with the whole family. Other members of the hospice care team can provide specific supports to the family.

Communication is talking in a common language about common goals. Expect excellent communication from the people you talk to. Make your own best effort to communicate well with them or have someone speak on your behalf. Good communication can make the difference between dying well and dying horribly. It also makes the difference in how grieving family members remember the last days of their loved one and the support they received before, during and after the person's illness.

Chapter 7

Care For The Caregivers

Immediate Needs

Long-Term Needs

Practical Supports

Professional and Volunteer Caregivers

Supporting Friends Who are Caregivers

How Children and Teenagers Can Help

Caring from a Distance

Caring for others in such a personal and intimate way as palliative care is one of the most fulfilling and life-defining opportunities in our lives. When you care for someone else you know in your heart, mind and soul that you are making a real difference in that person's life. Caregiving gives us that unique opportunity to remember what is truly valuable in our lives and within our families and community. Caring is not always easy. It can be physically exhausting, mentally taxing and emotionally draining. It can also be exhilarating, rejuvenating, peaceful, joyful and awe inspiring.

Immediate Needs

When I began caring for my parents and my grandfather, I was concerned about their physical needs first and then their emotional and spiritual needs. I was not interested in people's advice that I needed to take better care of myself, get more help at home, or even that I should get back to work. I may not have been prepared for the demands of taking care of loved ones at home but I had a lifetime of preparation in a loving family to want to be with my parents and grandfather in their last months.

What other people did not understand was that I had a whole life ahead of me. Later on I could eat well, sleep longer, work and enjoy myself. Right then, I only had a few months to be with my mother, my father and my grandfather. I was not trying to be a martyr. I was not ignoring my own emotional and spiritual needs. I was fulfilling them as best I could. Taking care of my loved ones was demanding, fulfilling and terribly important to me. I did it for me as much as I did it for them. They needed me. I needed them.

Yes, I hurt myself physically by ignoring my diet, exercise and time to be alone. After my father's death I could barely move my neck for months. However, I was fulfilling one of my greatest needs to be with my parents and grandfather, revel in our love and our family history. No family is perfect. No family has perfect relationships within it. However, I would never have any of the regrets that begin with sentences like: "If only I had...." What a legacy that time together is for me. I am a better husband, father, friend and neighbor because of those intense times.

Would I do it differently today? Yes. I know more now. I can take better care of myself so that my loved ones are not as worried about me. People who are dying still worry a great deal about the people who are caring for them. By taking care of ourselves, we can minimize some of that worry.

I hope some of what I present is helpful. Do what you need to do to make this time as fulfilling and meaningful as possible. You will not have this particular opportunity again.

Long-Term Needs

Although we might hurt ourselves in short-term caregiving situations, we must be wiser when we care for someone for a long time. It might be all right to use caregiving as an excuse not to eat and drink well, exercise or sleep well. However, when you do this for any length of time you will hurt yourself dramatically and you will hurt the person you are caring for.

Just as patients need support to meet their physical, emotional, spiritual, and information needs, so do family members and professional and volunteer caregivers.

Knowledge and experience can deepen our reservoir of hope and courage. Eileen McArthur explains: "As a volunteer in palliative care and later as a trainer of palliative care volunteers, I gained an understanding and a good deal of insight which served me well when I was faced with the impending deaths of my mother and my brother. My hospital experience provided me with the knowledge and experience that helped and supported both my family and me when we became the caregivers for our loved ones.

"The stories in Chapter 4 of this book are very similar to many of my personal and hospital experiences of the human drama and emotions observed. I saw courage, great courage, in patients and their families and I also witnessed great sadness, disappointment and guilt. I consider it a privilege to have been involved with a palliative care unit in a hospital and I know that this interest in helping to provide a 'good death' for the terminally ill will never wane."

Practical Supports

We hear only about 20% of what someone says and forget about 80% of that within one day. That leaves us remembering only about 4% of our conversation. During times of great stress, we probably forget even more. As we look at ways to improve how we care for ourselves and for others, we must always remember this simple fact. Most problems and conflicts between people stem from this simple fact. You 'know' I said one thing and I 'know' I said something else. If we fight over who is right, we will never improve our communication and improve our relationship. If you have a conflict, assume there was a communication problem and start over. That might help fix most situations.

Active listening is a skill that involves listening to what a person says while also questioning what they might not be saying, and why. Active listening also involves looking at the person's body language to see if what they are saying is consistent with how they look. Never assume you can 'read' someone's body language. Use the person's body language as clues to use in questions. For example, if someone is saying they are very happy to see you but they are wincing at the same time, find out if they are in pain or discomfort or if they are thinking about something else while talking with you.

You can always tell when people are not practicing active listening. If there is no silence in a conversation then people are thinking up their own replies to someone's comments while the other person is still talking. This is not active listening. A good listener uses the silence after someone finishes talking to think about what was said and, perhaps, rehearse what they want to reply.

Take care of yourself physically, emotionally and spiritually. That means that you need to eat some healthy food (get neighbors and friends to do some cooking for you and you can freeze it until you are ready) and healthy drinks. Pray or meditate to feel the comfort that this gives you. Take some time for a quick walk around the block or some other light exercise. Sleep as much of a normal sleep as you can. Get others to give you extra time for 'cat naps'.

Remember that caregiving is mutual. The person you are caring for must be allowed to give some care to you in return, if they can. Too often we do not want to 'bother' the person with our concerns, worries or needs. They need to be wanted as much as you do so let the caregiving be mutual. As the illness progresses, they will not be able to do as much of that. However, there is a special gift that even people in comas offer us: they give us quiet time to think about what is important in our lives and what we may want to do with the rest of our lives that makes sense to us. Use the time well because it truly is a wonderful gift.

You need to get as much information as you want to understand what you can do, how you can do it well and where you can turn to for help. Practical advice is available in books like Caring for Loved Ones at Home.

The more connected you are to your family, friends, neighbors, colleagues from work, your community and your cultural and spiritual community, the better you are able to deal with the ups and downs of caring for your loved one who is dying.

In periods of overwhelming stress, you might find it helpful to concentrate on a quote or prayer. At one point in caring for my mother, I did not think I could go on. She was throwing up and all I could do was hold the vomit tray and help as best I could. I thought I was going to be physically ill myself or faint. I remembered a paraphrased version of a verse from the Bible and I kept repeating it over and over again to focus me on helping her rather than becoming sick myself. The verse helped me concentrate on something other than my fear. The verse as I remembered it from John 14:27 was, Peace I give you, my peace I give unto you: not as the world giveth, give I unto you. Let not your heart be weary, neither let it be afraid. Your own religious or poetic background may help you find a similar quote or prayer.

There are some mistaken ideas about the kind of person you need to be to care for someone at home:

You need unlimited energy. What, in fact, you really need is enough support from others so you can all pool your energy together to help the person who is ill.

You have to accept all the responsibilities on your own shoulders. No one's shoulders are that big, so share the responsibilities so you have more time to enjoy each other's company.

If you look after yourself, you are selfish. How little we must think of the person who is ill to think that they do not care about our well being. If you do not take care of yourself you will probably make the person who is ill feel worse about their situation. This is a mutual experience and everyone must help each other and themselves stay as healthy and comfortable as possible.

If you are exhausted, you must really care about the person who is ill. Plan to take some time off (often called respite care). It may mean taking a few days off from caregiving. It may mean the person you are caring for goes to a hospice or respite program for a few days to get their pain and symptoms under better control while you rest at home. When my grandfather was ill, I took a few days to travel to my niece's baptism. It wasn't easy leaving him (for either of us) but we knew it was necessary and my niece and I now have a lifelong memory to share of that important event.

People should know what we need and offer it to us. It just isn't going to happen that way for most people. People need specific requests to know how they can help you. You have to ask ­ even your own family ­ so that their help can be specific, useful and timely. Most people do not know how to offer help but are most willing to help if asked.

You might ask for help with practical chores around the house. You might ask someone to pray with you in quiet. You might ask someone to go for a walk for an hour to enjoy the fresh air and company. You might ask someone you know who works in health care to answer some questions about your loved one's care. You might ask someone to watch some television with you or go to a movie together. You might ask someone to stay with your loved one while you go out for an ice cream.

The more you ask different people to help in different ways, the more support you will get. If you do not ask, and people do not know how to offer, you will be alone.

God will take care of you. God will help you spiritually and emotionally. At the same time you need to help yourself. Get support from family, friends, special groups, telephone calls with loved ones far away, moderate exercise, massage, books, good nutrition (and some special treats that may not be on the nutritionists' top ten list!), some time away for a night or two rest (called respite care), some fun everyday, writing a journal or diary, sleeping a little more, a walk in nature, reading a good book, some calming music, silence and a talk with a favorite pet. Most of these things do not have to take a lot of time but all of them will help give you an extra bit of energy. This is not selfish; it really is about meeting the loving needs of the person you are caring for and some of your own needs as well.

Don't spend a lot of time thinking about your feelings. When we think about how we are feeling and when we take the time to express our feelings through talking, crying, walking or praying, we can move beyond our own feelings and be more supportive of others. When we block off our own feelings, we are more likely to block out other people's feelings too. Denying our feelings may provide us with temporary relief from dealing with them, and this denial can be very necessary when faced with overwhelming responsibilities and feelings. Long-term denial, however, may lead to, or worsen, physical or mental illnesses that could be prevented or minimized. Eventually, you will deal with your feelings. Our bodies and mind forces us to deal with them, whether we want to or not. If you deal with your emotions every day, it minimizes the chance of being overwhelmed by denied emotions later on.

Sometimes when we try to care for someone else we lose sight of what is helpful and who else may need us. A mother caring for a dying child is torn between being with that child as much as possible while also wanting to be with her husband and other children. This most troubling dilemma must be faced squarely with the help of one's family and friends. We cannot be all things to all people but we cannot completely isolate ourselves from others who need us even as we care for someone we truly love.

Sometimes it is necessary to say no. No, you cannot do everything for everyone. No, you cannot stop working. No, you need to see your children. No, you need some time for yourself. Saying no can be very difficult for those who see their role as caregiving. In North American society, we still assume that caregiving is mostly for women. This puts a completely unfair responsibility on women, especially those who are caring for several people at the same time and prevents men from reaping the benefits of caring for others. Caregiving can be exhausting if left to a few. It is in sharing the care, women and men together, that minimizes the health risks of caring while fulfilling some of our most fundamental cravings for feeling needed and feeling part of a family and community.

We are under the illusion that it 'is better to give than to receive'. This illusion supports our intuitive feeling that, "I'd rather be helping someone who is dying, than being the dying person myself." This sets up an unequal relationship. At some point, you will be the one receiving someone's care and if they treat you unequally you will resent it too. Saying no is one way to show respect and caring. Just as children who are grieving need boundaries and rules, so do adults. Show that you understand that you need care as well by saying no to others that may be demanding too much care from you.

When you recognize the equality of caregiving and receiving care, you enter in the realm of true love and compassion. You will be a real person again rather than a caregiver or server. You can find that well of true love that you have shared before the person's illness. You can become husband and wife, brother and sister, parent and child again and revel in those wonderful relationships. You can find that balance between love, gratitude and service that is so fulfilling.

It can be very helpful to have a private space where you can go to hide, sleep, re-energize, pray and think. Even if it is just down the hallway, it is a place to recover your energy and perspective.

Sometimes when I get overwhelmed by what I expect of myself and what others might expect from me I take a deep breath, close my eyes and ask myself four questions:

1. What is it that I can do to help my loved one?

2. What is it that I cannot do to help my loved one no matter how much I wish I could? (e.g., I cannot cure them. I cannot make them work out problems with other family members. I cannot make them take their medication if they do not want to.).

3. What is it that my loved one can do to help me?

4. What is it that my loved one cannot do to help me no matter how much they wish they could? (e.g., They may not have the skills to communicate all their feelings to me. They may be incapable of knowing how much I love them.)

This exercise helps me focus on the possible rather than become overwhelmed by the impossible.

There is now a wealth of books, videos, and audiotapes with the stories of people in similar circumstances to you. Borrow them from the library. Ask for copies from friends who ask what they can do to help. People have found ways to make caregiving both more enjoyable and less demanding. Learn from them and teach others.

Consider having a support circle, like the one described later in this book, to help you and the person who is ill. Such a circle can minimize some of the chores or tasks you do not enjoy as much yourself, so that you can concentrate on those things that have the most meaning for you.

Professional and Volunteer Caregivers

Much of what is in this book about helping the patient and family members during a person's illness, and the grieving afterward, holds true for professional and volunteer caregivers as well. You are human beings first and some people will affect you more visibly than others. When my mother died, our family physician, the visiting nurse and the homemaker sat together and cried. They did not pretend to be strong or professional distant. They did not worry about embarrassment and most importantly, they did not go away. They stayed and expressed their feelings honestly. It was their greatest gift to the rest of my family for it showed us their concern without words and how my mother had touched their lives.

Hospice care bereavement programs follow many of these suggestions by allowing people to express their feelings, keep in contact with some of the caregivers, and use the sense of touch to express concern.

When we look at caregiver stress, I will separate caregivers that work in palliative/hospice care from acute care doctors, nurses, therapists, clerics, psychologists and the others.

Acute Care Caregivers

People who work in hospitals and medical centers are used to treating patients who are there for active, cure-oriented treatment. Generally, health care systems do not provide them the time, training or staffing to provide excellent hospice care. Most give the best clinical care possible in very difficult circumstances. Some may have some of the following stresses:

Difficulty in accepting that a patient's physical and psycho-social problems cannot always be cured or controlled.

Difficulty in knowing when to get palliative care for their patients. In some areas, there may be little or no palliative care services available that can add to the stress.

Difficulty in deciding how much to tell a patient about her condition.

Difficulty in coping with the severe constraints of time and low staffing ratios involved in patient care and administrative responsibilities.

Frustration at being involved with a patient's family whose emotional resources have already been drained by the patient's illness.

Disappointment at being unable to fulfill the patient or family's expectation of dying a good death.

Depressed because they have no time to deal with their own grief when a patient is dying or has died.

Anger at being critically reviewed by the public.

Difficulty in deciding how involved to be with the patient and the family especially outside of normal working hours.

Frustration in their inability to give the kind of care they want to give.

Difficulty with their inability to be a good communicator.

Palliative/Hospice Caregivers

The stresses of palliative/hospice caregivers differ from those of acute care staff. Although they often have more time to help patients and families, their professional position has been given less credibility because they are dealing with people who are dying. There are no miracle cures and there is an erroneous assumption that their work is, therefore, less rewarding or valuable.

With added time to spend with patients and families there are added concerns and problems to deal with. The philosophy of physical, emotional and spiritual support is not always easy to fulfill. Some patients have not accepted that they are dying. Some patients and families have major unresolved problems that frustrate the caregivers' hope for a peaceful and comforting death for a patient.

The relative newness of palliative/hospice care means that the systems have not been perfected, and may never be perfected, to everyone's satisfaction. In designing the program, frictions between well-meaning caregivers occur because each has certain beliefs about what they think is the palliative care program.

Caregivers grieve someone's death in their own individual way. In cases where they have come to know patients and their families closely, the grieving is more acute. There are few people outside of hospice care who can understand the mixture of personal satisfaction and professional stresses that these caregivers have. One of the advantages of working in hospice care is that professional stresses are more clearly identified and addressed. The following list describes some of the differences between acute care and hospice care personnel:

There may be less conflict regarding a patient's death because hospice care is concerned with comfort rather than prolonging life.

There may a lower patient/caregiver ratio in hospice care so that time and administrative stresses are reduced. This ratio depends on the particular hospice care model in place. Freestanding hospices and hospital units have lower staff ratios, for example but consultation teams in hospitals may not.

There is a team spirit in hospice care and an acceptance of the hospice care philosophy that includes more formal and informal supports for the professionals and volunteers involved. Although team spirit exists in acute care as well, there is often little time during work to provide each other support to enhance that spirit. Financial cutbacks threaten to reduce the amount of time that hospice care teams can provide mutual support as well.

There is more open and honest communication between caregivers and the patient and family which decreases the likelihood that different caregivers will not share some of the information they have.

There is great patient/family satisfaction and approval of hospice care teams that reflects well on the caregivers. In the home, hospice care teams have been invited in to help which adds a special dimension of intimacy and satisfaction.

There is often specialized training for hospice caregivers which prepares them for their work. Part of this training is recognizing the cultural and religious diversity of people in North America. We cannot expect a first generation Chinese person to have the same general attitudes toward dying, death and bereavement as a fourth-generation Canadian with Italian and Scottish roots.

There are fewer unpredictable situations as many terminal illnesses have a relatively well understood process toward a natural death. Symptoms may still change quickly, however, hospice care teams can help prepare patients and families for what is likely to happen in the months ahead.

Hospice care offers people an opportunity, every day, to make a dramatic and measurable difference in someone's life. What an opportunity to fulfill one of our greatest needs ­ to feel needed and to know that our life has meaning.

Supporting Our Friends Who are Caregivers

The older we get the more likely we become caregivers for others. We can also help our friends when they are providing a lot of care to a loved one. In return, one day, these friends can provide us with similar supports when we need it most.

Here is a short list of things you can do to help. Keep in mind that many of the suggestions above can be adapted by you to provide support as well.

  1. Be there. Be physically present as often as you can without intruding on your friends need to be alone with their loved one.

  2. Tell the person that they can call you in the middle of the night if they need some reassurance, encouragement or specific information they know you have. This offer will be used rarely but just knowing there are people out there who can help in the middle of the night is very reassuring.

  3. Provide whatever stability you can by doing things on a schedule. This gives your friend something to look forward too. "It's Tuesday today. That means Sue is coming over this afternoon for a visit!"

  4. Help the person know that they cannot plan weeks ahead because they won't know how the illness will progress. There are certainly trends in the progress of people who have specific conditions but there are lots of variables. Therefore, encourage them to take each day as a miracle of time and loving with the person they love. Help them to adapt to changing circumstances. Help them to see what is special about this day.

  5. Take the person away for short walks, a snack, a movie, shopping, dining, etc. They may not want to leave their loved one so respect that. If another family member or friend can be there with the person who is ill, perhaps your friend will feel more comfortable in getting out for a bit.

  6. Understand the caregivers need laughter, love and tears like everyone else. Don't presume to know what they need. Ask them.

  7. Provide information that will be helpful now or later on. People often have concerns or worries late at night and will pick up some information you have provided them that they find helpful.

  8. Invite your friend over for tea or a meal. People often don't eat as well when they are providing care for someone. Give them a nutritious, tasty meal and provide them with the leftovers to take home.

  9. Make frozen meals to bring over so they don't have to cook. Or bring over a fresh fruit or garden salad with a specialty dressing to make it extra special.

  10. Send or bring over fresh supplies of fruits, healthy treats, ice creams and such.

  11. If you are farther away call regularly and send cards, emails, notes, letters, music CDs, movies on DVD, etc. Stay in touch in this way so the person knows you are thinking of them. They may not read everything, watch everything or listen to everything, but they will know they are loved.

How Children and Teenagers Can Help

Many parents presume that their younger children and teenagers should not be involved in providing physical, emotional, spiritual or information supports to loved ones. They think the children will either not want to or the parents may think they are protecting their children from some of the unpleasantness of providing care.

Many of today's boomer generation and their children have little or no experience caring for loved ones at home. I certainly did not. We were prevented, "for our own good," from participating in this kind of care. The result is that many of us are afraid to even try and learn and benefit from providing care.

Care has many life-affirming and life-defining opportunities built into it. Some of your fondest memories of loved ones may be of times you cared for them. Some of your greatest accomplishments will be those times when you helped someone live at home during their recovery or illness. Children and teenagers should not be prevented from experiencing some of these same joys.

Young children and teenagers can be asked what kind of help they would like to provide at home. They might help someone with their errands, answer some mail for them, read to them in bed, or make sure that neighbors and friends can come and visit. They may also be encouraged to watch as you provide physical care. They can be asked what things they might be interested in learning, such as feeding, bathing, or turning the person in bed. They may help getting their loved one to the bedroom or bathroom.

There are some aspects of care that may be more unpleasant for some people than for others. These may include odors, unfamiliar degrees of intimacy, and cleaning up after the person. Others may be more disturbed by new expectations of helping that will reduce their time spent with friends. Older children and teenagers may also have a heightened awareness of their own body and, therefore, may be more uncomfortable providing intimate personal care when helping their loved one. Recognizing these possible areas of discomfort make it possible for you to openly discuss everyone's concerns. In this way each individual can list those aspects of care they are most comfortable in providing and which they would prefer, if possible, that someone else do. For example, I was uncomfortable giving my mother a full-body bed bath. My father recognized this and did that part of her care. I was able to stay up throughout the night to provide support and care to my mother so that my father could get a relatively good night sleep before work the next day.

There are times, however, when one cannot pick and choose what they must do. Many of life's events have similar unpleasantness­few of us, for example, enjoyed studying for exams, taking out the garbage or being involved in the annual spring cleaning. But even during these times, we have fond memories of studying with someone we liked very much, playing with the dog as we took the garbage out or dumping all the dirty clothes over someone's head during spring cleaning. Caring for loved ones has similar opportunities for humor, laughter and play while the serious work gets done as well. Caring for loved ones also has profound moments of awareness, thoughtfulness, intimacy and love. These should not be missed.

Caring from a Distance

In the Stories at the beginning of the book, you can read about Julie caring for her mother Sara from across the country. There are very practical things you can do to help from a distance. Much of what you do depends on whether there are family and friends nearby who can help your loved one when you cannot.

When There are Family and Friends to Help

Most of this section assumes that you are the main caregiver who is coordinating care, as best as possible, from a distance. However, if there are local family members and friends able to provide care and coordination, your role might be quite different.

The person farthest away often feels quite isolated from the day-to-day activities around their loved one's care. At the same time, the ones close by are often overwhelmed with juggling care of the loved one with all of their other commitments (e.g., to their own growing family, to their work and community commitments). In such situations there is less time for ongoing communication and that can lead to friction.

Having been on both sides of this equation, I know how important it is that everyone recognizes the stresses of the other person as best they can. With you being far from your loved one, your contribution can be making regular phone calls or communication through e-mail, letters, flowers, and cards. As well, you can provide encouragement and support to those providing the day-to-day care. They need to know that you are thinking of them and not just leaving them to do all of the thinking and support.

Your ability to listen to their stories of joy and frustration can be very helpful. As well, since you are farther away you are likely working or, at least, not loosing part of your funds in providing day-to-day support. You could offer those providing care some extra money to allow them some much needed respite care (e.g., a weekly massage, a weekend away from home which would require some paid nursing care perhaps).

At the same time, your long distance suggestions cannot be based solely on what you would do if you were there because you are not. The people there need to be allowed to do the best they can given their circumstances. You might wish that someone was there more often, or helped more with meal preparation, etc. You cannot 'coach' from a distance without creating a great deal of tension.

The people providing care also know that their loved one often 'lights up' when you call. That is only natural as you are far away and, therefore, your call is special. However, it is important to recognize that your family members and friends providing the care also need your 'special' calls of encouragement and support.

At a distance you can volunteer to do some of the telephoning of others farther away so that those providing the day-to-day care do not have to do all the phoning. You can also help with 'paperwork' chores like some of the legal, financial, and if needed, funeral preparations. You can help by getting the basic information that those close by need to make decisions.

There may also be a need to do some library or Internet research about your loved one's condition and treatment that those nearby cannot find the time to do. Do not overwhelm them with information but rather provide them with some concise information they can use in talking to the decision makers about next steps. This can be an invaluable gift you provide your loved ones and those caring for them.

For those close by, especially in situations where a loved one's health is at great risk, please understand that everyone far away listens to each telephone ring as the one that leads to a call with bad news 'from home'. Recognize that being far away is isolating and lonely. Circumstances prevent those far away from being at the loved one's bedside and that is hard.

This mutual understanding is what makes it possible to be supportive from far away. Talk as often as possible and exchange thoughts and feelings to be supportive of each other and, therefore, supportive of the person requiring the home care.

When There are No Family or Friends to Help

When there are no family members or friends nearby to provide support, you must look at other alternatives. Depending on your loved one's needs and financial circumstances, you may need to ensure they stay in hospital or a rehabilitation center a bit longer, if possible, as there will not be enough home supports. Even with home care services provided through government and private organizations, there may be several days where it would be unsafe to go home. This is where assertive advocacy may be necessary. You will need to have the telephone numbers of the decision makers in the hospital or center to ensure that you can get to them before your loved one is discharged.

Once at home, and depending on your loved one's need for help, a daily check-in call by you or a visit by a paid professional/volunteer may be the least that needs to be done to ensure your loved one's safety and that they know they are not alone as they recover from surgery or illness.

If you have time to prepare in advance, you can check with the local home care services offered by the government or for-profit organizations. Some of the services offered are described in the section later in the book, Finding Support in Your Community. If you do not have time before a medical emergency to arrange that, you will need to contact the hospital or rehabilitation center's discharge planner even sooner to help ensure the person is seen everyday once they return home.

It is easy to say you should plan for these situations in advance. However, that is difficult to do given all the demands on your time. If you are reading this book because of a medical emergency, concentrate on the short-term things that need to get done. Use this opportunity to learn what you can do about longer range planning after this event is over.

Note: The following information assumes you cannot be with your loved one quickly. If you were able to be with them, the rest of this book is the information you will need.

Short-Term Situations

Short-term situations are often about 'crisis management' and so you will be tired and frustrated that you cannot do more or that you cannot get everything for your loved one when they need it. It is not comforting to know that this situation may be a bit like 'just getting through it is okay' but that might be the best that is possible for now. Once you have a bit more time and more information upon which to make decisions with your loved one, it will all feel more comfortable and do-able.

ß Your greatest opportunity in the short term is to act as an assertive advocate for your loved one. Firmly and fairly talk to the decision makers about what has happened, what needs to happen next and what must be in place before the person goes home. Use some of the other sections of this book to help you ask the right questions of the right people.

ß Next, you need to ensure that your loved one has access to a telephone, if they are able to speak. You want to be in contact as much as you can given their circumstance and your own.

ß If they need to stay at the hospital or rehabilitation centre for more than a few days, see if there are any volunteers, social workers, or pastoral care workers who can come and spend some time with your loved one and who can contact you with any news, questions or concerns. Telephone and e-mail are both excellent tools to keep in touch with busy people.

ß If the short-term situation will take a matter of days, see if you can get time away from work and/or home commitments to concentrate on getting what is needed for your loved one. If you can actually go and visit them during this situation, that would be great. Given that is not possible in many situations, you will need to ask for the help of your own family and friends nearby to ensure you have the time and information you need to be as helpful as possible to your loved one. Telephone calling and e-mails have inevitable frustrating aspects to them. You will not always get to the right person at the right time which means you need extra time to make those contacts.

Long-Term Situations

When you have more time to plan, you gain a sense of comfort and control when you plan in advance. This planning may be necessary because your loved one is going in for surgery in a few months or because they need ongoing, long-term help because of disability or aging.

Although it is said elsewhere in this book, you need to take care of yourself in long-term care situations, even when you are far away. It is too easy to get caught up in the telephone calls, e-mails and research. You need to include those who love you who live with you and nearby. You need physical, emotional, spiritual and information supports as much as your loved one. Ensure that you get it. Care giving is mutual and you need to ask for help before your own health is hurt.

Whatever time you have to prepare, here are some tips to help you gain as much control over the situation as possible:

Later in this book is a chapter on Creating Your Own Support Team. It is full of information that can help you and your loved one feel a sense of control over future events. Creating a support team may require you to visit your loved one and use some of that time to plan together whom to ask to be part of such a team. Neighbors can be wonderfully helpful when asked to do specific things. Colleagues from your loved one's work, members of their spiritual community, and members from any organizations or community groups they belong to can be a rich source of participants in such a team. Your first goal is to find someone who will act as a coordinator of a team and the person who will keep in touch with you most often.

Do not underestimate how many people may be willing to help. The key is knowing how to ask. For example, which of the following requests for help from a neighbor would you be most likely to accept:

"My Mom is pretty sick. Can you help us?" versus "My Mom is pretty sick. We were wondering if you might be able to help by cooking a casserole for her once every two weeks or picking up her medications at the pharmacy every three weeks or so? Would you be able to do one of those two things for us?"

The second request is specific and time limited. People know what you are asking for and can easily tell you honestly if they can help or not. The first request is too vague and will scare people. They may think you want them to spend many hours doing things they feel unqualified to do. The chapter on creating a support team will help you ask for help successfully.

Whether your loved one is a member of a specific faith community or not, such a community can be wonderfully helpful. The hospital pastoral care department or the faith community closest to your loved one's home are two excellent places to start. There is a growing movement to encourage faith communities to go back to their caregiving roots and your loved one can help them achieve just that. Be diligent in finding the right group for your loved one.

Check out local libraries, newspapers and voluntary organizations to see what the local community already offers that might help your loved one. Some of this can be done by Internet and telephone. Perhaps there is a seniors' center, a volunteer group, or a spiritual community that are already in place and ready to help. Your loved one may also be part of a close-knit group (e.g., art guild, bridge club) whose members would enjoy helping out.

You will also need to get some paperwork in order. Some of this can be done during a visit with your loved one while some can be done from a distance. For example, your loved one should have Powers of Attorney for personal care and another for financial decisions. You may be their power of attorney for both as the loved one accepting responsibility for their care. You need to ensure that the family physician, specialists and hospital have that power of attorney on record. See the section on Powers of Attorney later in this book.

You will need to make a contact list of the family physician, specialists, lawyer, accountant, funeral home directors and others and contact them by phone or letter to let them know you will be coordinating care when your loved one is no longer able to do that for themselves.

You will need to know where documents are kept and get them up-to-date, if necessary (e.g., Powers of Attorney, Last Will and Testament, marriage license, military papers, bank statements, other legal, financial, investment, and funeral pre-planning documents).

Record all important information: social insurance numbers, health numbers, insurance policies, driver's licenses, credit cards, pre-planned funeral and internment information, passports, medications, emergency contact numbers (family physician, specialists, hospital, ambulance) as well as contact information for local friends of your loved one who can be called for help, if necessary. See forms in Chapters 16 and 17.

You will need to have information on all the utilities and other regular bills that come into the house in case you need to take over the handling of these bills.

You will want a copy of the home key. If your loved one agrees, you may also find it helpful to have copies of other important keys (e.g., car, cottage, safety deposit boxes) or know where they are kept. See if your loved one will also give a home key to a trusted neighbor in cases of emergency.

It might help to have contact information for local basic home repair companies to respond to any emergency repairs (e.g., flooding toilet or basement drain, a broken furnace).

You will need to let your family and employer know that you may be called away suddenly to care for a loved one for a while. Your work needs to be organized in such a way that someone can fill in for you without too much inconvenience for them or your employer. For example, if you are in an administrative role at work, you might have a binder filled with what you do, how you process things and get the work done. Someone who fills in for you during vacations or medical emergencies would be very pleased to have that.

ß There may be a time when you need to go to your loved one to handle their transition from hospital or rehabilitation center back home. Again, knowing this is possible allows you to prepare for it. If it is not a complete surprise to family, friends and your work, then it is more likely you will get the support you need.

Check with your employer and government to see if they have any compassionate leave policies that would allow you to take time from work to care for your loved one. In the extreme case of your loved one dying, your employer or government may have a leave through their unemployment insurance plan to help cover some of your income loss during this time. Checking in advance about such policies can ease your mind a bit.

Family Hospice Care:

Pre-planning and Care Guide

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Copyright © 1986, 1989, 1993, 1999, 2002, 2006 Harry van Bommel

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