2: Hospice Stories

Chapter 4: Personal Stories of What Is Possible

The following stories highlight some of the main points in this book. We often learn best through the stories of actual people. I have summarized their thoughts, with their permission, as if they were speaking directly to you. Some of these stories appeared in my first book Choices. Their advice and insights are timeless so I have reproduced them here. Others were first published in The Pain Management Newsletter published by Knoll Pharma Inc. in 1997 and 1998. The story by Dr. Cicely Saunders is based on an interview in the summer of 1996.

Dr. Cicely Saunders

Dr. Saunders is the modern founder of hospice care. Her previous careers as a nurse and social worker opened her eyes to the needs of people with a terminal or life-threatening illness. After completing her medical studies and working with terminally patients, she decided that a freestanding hospice providing excellent physical, emotional, spiritual and information supports was needed. She founded St. Christopher's Hospice in London, England in 1967. After she retired from medical practice she continued to work in other capacities regularly at St. Christopher's Hospice until her death in 2005. She is genuinely missed.

The last person that I cared for was my husband, Marion, because I am not in clinical work now. He used to sit back and say 'I'm completely happy. I have done what I had to do in my life and now I am ready to die.' I don't think you can do better than that. He died in 1995. He was nearly 94. He is the artist that did all the pictures around St. Christopher's Hospice.

He had about four life-threatening illnesses during his last 10 years and he was in and out of here but he was basically at home for those 10 years. He came in here for the last six weeks.

We have been looking at what spirituality really is in this day and age when so few people talk in religious language. I think it is the essentialness of what it is to be human in your own culture and relationships. Therefore, what we owe people is respect and attentive listening which enables them to realize that they are valued as themselves. I think that is the essence of what we are looking at in spiritual care. They may have a feeling for the beyond and I think we should be very ready to see what can still give them delight. And also what are their important symbols. All of that may be a key into how they see the beyond. So far as my husband was concerned he was not awfully traditional but he was Polish Catholic and completely sure of where he was going and that it was all right.

The medical director here looked after Marian absolutely beautifully and the knowledge of how to do that was being given by him. My own knowledge of my own journey through bereavement and so on before was a help. The most important thing, I suppose in a way, was our love for one another. We had very good memories. The thing that helped me most afterwards was that at the back of my little diary I had written the things he had said to me over the course of about four years. After he died I wrote them all out and as an artist, he was saying to me 'You are my complementary color'. Also, 'We have found ourselves. I am safe. I am happy' and things like that. They were very constructive and helpful.


Dr. Jim McGregor was an Assistant Professor in the Departments of Family Medicine and Oncology at Queen's University in Kingston, Ontario; the Head of Palliative Care Services at Hotel Dieu Hospital and Palliative Care Consultant to the Kingston Regional Palliative Care Center and Kingston General Hospital. He has since moved to the United States. Onc of his patients was 'Ann'. This is his description of how his team helped care for Ann's pain and symptoms.

Ann is a 47-year old woman with metastatic cancer of the lung. In mid-November, 1996 on a Friday, she arrives at the hospital with abdominal pain and nausea. Her greatest concern, however, is not just with her physical pain and uncomfortable symptoms. She is supposed to get married the following day and wants to know if someone can help her enough so that she can make the service. I see Ann on the Friday afternoon.

Ann cannot get from her bed to the bathroom without vomiting. Her nausea may be caused by the simple act of moving around. She feels full and bloated on small amounts of food and liquid. To try and ease her pain and symptoms, we prescribed a different nausea medication and put Ann on continuous subcutaneous medications using a portable pain pump that she can wear under her clothes and with which she can walk about.

Ann's nausea and pain were well controlled within hours. She remained on the pain pump and attended her wedding the next afternoon and evening, to her own amazement and that of her family. She returned to hospital that Saturday evening after the reception. She was tired from both the excitement of the day and her condition. By Monday she was able to begin taking some of her medication by mouth. On Tuesday the pump was removed and Ann was released from hospital on Wednesday to begin her married life with her new husband.

'Mr. G.'

Andrew Féron, M.S.W., C.S.W. is the social worker on the Palliative Care Unit at Parkwood Hospital in London, Ontario. He was part of the team caring for Mr. G. Mrs. G. talked about her husband's suicidal wishes and she asked, "How could we allow her husband to go on living when 'No decent human being would allow an animal to suffer like this without putting it out of its misery'".

Mr. G was a 70-year old man with recurrent carcinoma of the nasal cavity. His pain and symptoms were well managed. He was dearly loved and cared for by his family at home until Mr. G's cancer ate away his mouth and nose, leaving a gaping tumor from his eyes to his chin that became infected with maggots. Mrs. G. could no longer cope with his illness and he was brought to our unit. He wanted help to die.

Mr. G's physical symptoms were well managed but his emotional suffering and that of his family's were unmanageable. Our team struggled with how we could 'be present' during Mr. G's last days. At times it was even difficult to relate to Mr. G. as a person because, without a face, he lost his identity. To be so ill and helpless that death offers the only release is a fate so awful to think about that it becomes understandable why some people want to discuss euthanasia or assisted suicide in their own particular case. Although I am opposed to euthanasia and assisted suicide, this case tested my beliefs.

No one on the team could imagine Mr. G's suffering but all could sympathize with his request to die. I admitted to Mrs. G. my humanity and the fact that I also struggled with feelings of frustration at not being able to do anything directly to ease Mr. G's emotional suffering or improve his quality of life. I talked about the pain I saw in his eyes as he witnessed peoples' reactions to his appearance. I acknowledged the wonderful care that Mrs. G. had provided and assured her of the value of her continued involvement. I allowed her to vent her anger, frustration, exhaustion and grief. Verbal communication with Mr. G. was almost impossible and he did not have the strength to engage in another relationship with a well-meaning professional. By supporting the family, I empowered them to support Mr. G. in his suffering.

The answer of how best 'to be present' with Mr. G., without helping him to die, came from Mr. G's six-year-old granddaughter. The team had recommended that she not come to visit her grandfather as his condition was deteriorating quickly in these, his last days.

Little six-year-olds can be quite persuasive and she insisted on seeing her grandfather. She was told in advance what he would look like and what the room he was in looked like so that she would not be frightened or surprised by what she saw. When she got to the room, she rushed in, ran to her grandfather, gave him a big hug and said, "I love you Grandpa". She saw the man she loved inside the sick body. She touched his heart and showed the rest of his family and the palliative care team the answer of how 'to be present'. It is easier said than done, of course. It takes unconditional, childlike love.

'Hans Peters'

Like many veterans I am not afraid of death; I am afraid of how I will die.

Hans Peters was a farm manager in his mid 50's. He was widowed a few years before his own death. This is his story compiled from several interviews. He had a lot he wanted to say to people. He wanted to help others understand what dying means so that people could benefit from his experiences.

I am dying but I am not afraid of death. I stopped being afraid of death that May morning in 1940 when I looked up from milking our family cow to see a Nazi soldier pointing a rifle at me. I fought later in another war and saw death all around me. Through my experiences I became more afraid of how I would die rather than death itself.

I won't live much longer now. My doctors tell me I have emphysema. It feels like a tight chain around my chest. You breathe and breathe and don't seem to get any air into your lungs. For the last few weeks I've been breathing oxygen from a tank. It makes my mouth dry and I can get 'high' if I breathe too much of it. I've been smoking steady for 45 years now and this is the result, but what the hell ­ when I was a kid on the farm my father gave all his sons a pouch of tobacco on the day we graduated from elementary school. My wife kept telling me to stop smoking but it was too hard for me to do and I enjoyed it so much. When my wife died I smoked even more and cared about it less.

With emphysema you can live for many years, so they say. But I have a brain tumor too, which my physicians can't operate on so I will die pretty soon. One of the many doctors who looked after me was surprised that I didn't worry too much about death. She was a young neurologist and really upset by the news she had to give me about my illness, especially that I only have a few months to live. She hadn't experienced death as often as I had and was afraid of how I would react to her news.

After the initial shock wore off I took stock of my life and with few exceptions was quite pleased. I had married the girl of my dreams and our kids have grown to be good, hardworking and loving people.

You know I was a farmer. When the doctor found out I was a farmer, she told my kids that farmers understand death much better than other people. Farmers understand how seasons affect the life cycle: in spring, life begins; in summer, life grows and becomes productive; while in the fall, life's work is harvested. Of course the winter season is that short period when life ends, only to begin again very soon in a new form. No big deal.

I believe in God and in an afterlife. When my wife was in a coma she saw heaven and said it was more beautiful, glorious and exciting than even our love for each other or the birth of our kids. She described her vision as her standing on one side of a flowing yet shallow river. She told me, "I had to make a choice of whether to cross the river or return to my family. It was the hardest choice I've ever made for heaven was so beautiful. I chose to come back here because I knew I couldn't leave you yet." She told me of the most peaceful world she had ever seen. I believed her then and I am comforted by the memory of her words now.

Death isn't scary for me anymore. How I die is what keeps bugging me.

Now that I know I am dying I have a few suggestions for my friends. It is very important to me that they accept the fact that I am dying. It doesn't help me to hear them say that I am looking better or that I will be up and about soon. I won't. When some of my friends do not accept that I am dying it makes it difficult for me to talk about what I feel and what my hopes are for them. By what they say (or don't say) and what they do, they are telling me they don't want to face the fact that I am dying; nor I guess their own death one day.

When some people are unable to talk openly, it also makes it difficult for my kids because they have fewer people to lean on. Fortunately, I have family and friends who do accept the natural process of my dying. It is their gift to my kids and me that can never be repaid.

What would I suggest to employers who have someone with a terminal illness working for them? Terminal illness does not mean that a person is useless. It means so much for people to feel useful and needed. Do not let them go 'for their own good.' As long as they can work, with some help from others at the job, please let them work. Some people can even do some of their work at home. Let them. Employers and employees need to realize that working together during this difficult time can help them both.

What about my medical treatment? Doctors and other medical staff often mean well but they sometimes forget they are dealing with people. When things first began happening to me it was all too fast for me to think clearly. My kids were very worried and, therefore, they took over asking the questions that needed to be asked, e.g., What is happening? How soon can he come home? Is there anything we can do? What are his chances of recovery? What things do you think we need to know to help us to help him? Often these questions were dodged because there were no clear answers. There were educated guesses, however, and I think we deserved to know what they were.

I was brought into emergency five times before coming home to die and in three of those times I was given too much oxygen which made me 'drunk' for days. I don't remember my son's birthday because I was 'out of it' for three days. The frustrating thing for my family was that the first two times it happened, no one believed my kids when they told doctors that I wasn't acting as I normally would. They said my kids were exaggerating about what they saw and were being too protective of me.

When my kids finally got the doctor to explain why I had appeared intoxicated or senile for a few days at a time they were able to protect me from it recurring the next time I was rushed to the hospital. In other words, when they knew the facts, or educated guesses, of what was happening to me they could work together with the medical staff to give me the best care I could get.

So often in the hospital I heard other patients complain that people weren't listening to them. It seems to me life would be easier if everyone worked together, for it would spread the knowledge around to the people who know the patient best and who can assist him the best. Nurses often complained of the same thing. They admitted the doctors were extremely busy and, therefore, only had five-to-ten minutes to spend with each patient. What infuriated them was that they were the professional staff who saw the patients the most yet their opinion was often not even consulted, never mind listened to.

People make life so complicated when really it is quite simple. Imagine all the lawsuits that would never be laid against doctors, nurses, and hospitals if the patients and their families were involved from the beginning. A simple consent form isn't enough. Knowledge gives me self-confidence and some form of control which after nearly 60 years of living I have gotten used to having.

Perhaps one day, writers and the rest of the world will talk more with people who are dying. Better yet, let's get the children and the politicians to talk to us. They could learn a lot about living from people who are dying.

There are three things that keep coming back to me these days and maybe you can use them for your book. It will be the last time I guess that anything I say will mean something to more than just my kids and friends.

Faith in God makes accepting death easier. Faith in people will give people, like me, a more dignified death in the future than is possible today.

Employers need to understand that one day they will die as well and, therefore, they should benefit from the presence of someone who may be dying but hasn't given up on life or given up on being productive.

Friends need to understand as well that dying people still have the normal needs that we all have. I still think of having a good time, playing cards, reading the newspaper, getting into a good political argument. I enjoy laughing even though at times I need to cry. If my wife were alive, I would still enjoy sex and the comfort of a kiss and a hug. I also need to talk about my death, which is not meant to be morbid or to remind you that you are going to die one day too. Dying is not scary all the time but sometimes I feel I have to handle it all by myself because people don't understand what it's like.

My kids have been super for they hug me and let me hug back. They talk about how they feel and about how I feel. They help me make plans and try to ensure that I get the best treatment available. Sometimes they love me too much and that makes me sad because I know I must leave them. That is the hardest of all.

I hope that my life has meant something to my family and friends and also to people who have met me briefly: during the war, with my community work or just because I happened to smile at a stranger one day not knowing that he, too, may have lost a dear friend recently.

I also hope that when it is time for me to go I can say goodbye with some dignity to help my kids to build their strengths and their love. How I leave them will be in their memories for the rest of their lives and I hope I can make it loving and special, for they deserve at least that much.

Hans died with his children beside him at home. His children grew stronger and their love for each other and their parents did increase. They are very proud of their parents, just as their father and mother were proud of them. They hope to write a family history one day, so that their children can learn from the grandparents they will never know.

Dr. Carol Brock

Dr. Carol Brock is a family physician who has taught family practice to physicians at a community hospital. I met Dr. Brock in the mid-1980s at her home where our short interview turned into a two and one-half hour discussion of the physician-patient relationship.

It was clear from the beginning that Dr. Brock had sensitivity to the needs of her patients. Her choice of family practice was based more on her personal philosophy of what a family physician should be than what she had been taught about medicine during her professional training. The following is a summary of what Dr. Brock felt then, and now, about what were the most important things to pass along to other family physicians, their patients and patients' families.

The most important role of family physicians, when one of their patients is dying, is to pay attention­not just to their words, for words often say what patients think they should say, but also to their body language. Looking into their eyes can help physicians understand their patients' fears and needs. Each situation is unique. For example, a patient or family member may come asking for your medical advice, when what she really needs is to have her hand held and told that her fears are natural and surmountable.

People will come to you at different times during the period when they or a loved one is dying. They come very soon after learning about their terminal illness from a specialist. They come during the living process leading to death and their family members will come to you after the person has died. What they need most often is someone who knows them well, listens unconditionally and explains in clear language the medical process of the illness and what they can expect to happen.

Although the listening and counseling is crucial to patient care, there are also the practical components to medical care that the family practitioner can help with. In effect, the family practitioner should be the patient's advocate with all the other members of the medical world: the hospital, specialists, social workers, home care personnel and even the clergy when that is appropriate.

Assuming there are family members and/or friends available to help the patient, you can talk to them in a family conference and help them make group decisions. A family conference permits people to volunteer how they can help the patient best: housekeeping, driving to and from the hospital or appointments, or acting as the single family spokesperson with the medical specialists. During a family conference each family member can also talk about what they find difficult to do: bathing the patient, talking about death and dying, or answering phone calls from other family and friends who want to know about the patient's condition.

In effect, the family physician is helping the family to stop for a few moments during a very traumatic time, review the various options available to them, and consider what decisions must be made. This is naturally an ongoing process but once the family begins to work together (if this is possible), then the physician's time commitment does not have to be as great. As a family practitioner you can also suggest that your patients turn to the people closest to them for emotional, spiritual and physical support. It may appear obvious that people do this on their own, but so often people find it difficult to decide honestly what they really need in the way of support. People do not want to be a burden to someone else.

As a family practitioner, you can suggest that your patients relax in a comfortable chair, in a quiet place and think about what they really need in a physical, emotional and spiritual way. You can repeat often to your patients that once they have decided what they need, they must force themselves to ask for help. When people lived in smaller communities it wasn't as necessary to ask for help because people naturally helped each other. In today's urban world, we feel uncertain and are afraid to ask for help and our family and friends often feel they would be interfering if they offered their help.

If a patient asks for help, but the person they ask cannot cope with the terminal illness, the patient should ask someone else. If the first few people asked cannot give the patient the supports she needs, she, with the help of a family member or friend, should persist and ask someone else. I realize this is easier said than done but patients need support and family practitioners can help them get it.

Physicians or friends who say "There's nothing left to do" are doing a great disservice to the person. You have to help him find hope, and a way to cope, when all appears hopeless. There is always something you can do even if a cure is no longer one of the options. People can live a full life until their death, if they are given physical and emotional support.

People who are dying can put their financial and legal matters in order to save their survivors a great deal of frustration. They can also spend valuable time with their families and friends talking about future hopes and reminiscing about happy times in the past.

Families and friends can provide physical and emotional support by supplying prepared foods or babysitting. Being there yourself and being yourself are the most important things you can do. Words are often not as important as listening, holding a hand, sharing a tear and saying "I love you." A simple open-ended question like "How are you really feeling?" will permit the person who is dying or grieving to say as much or as little as she wishes.

One of the hardest things family and friends are asked to do is to listen repeatedly to someone who is grieving. It may appear that the person is living in the past, yet it is a common response to grief and sorrow and repetition makes the past and the death real and the healing effective.

Patients afraid of dying may ask their physicians very difficult questions, such as, "What are God's reasons for my dying now? What are the physician's own beliefs about euthanasia? What will happen to their families? Will they die in pain and will they die alone?" Most often people want an honest answer from their physician, not a church sermon remembered from the physician's childhood days. If you, as a physician, believe in an after-life, speak honestly about your belief. If you disagree with euthanasia in all cases, explain why. With the families, the physician can discuss how survivors of other patients dealt with the death of a loved one. Fears about pain are real and modern pain and symptom control techniques can take that pain away while keeping a person mentally alert. If you are unable to explain or prescribe adequate pain control, refer the patient to a physician who specializes in this field.

Patients are often afraid of dying alone but they may not talk about this fear. People, generally, do not want to be a burden to others. Reassure patients that you or a colleague are available to help at any time (patients don't usually abuse this offer) and discuss with the family ways to ensure that the person is never alone during the final period before death.

As a family practitioner I often see situations where there is little, unified family support. Part of the family wants one thing for the patient and another part wants something totally different. These are difficult situations at best and again the physician's primary concern is the patient's needs and desires. If it is possible, get the patient to designate a spokesperson for himself and encourage the family to concentrate on the patient's wishes rather than their own. If the situation is more difficult, try and bring other people into the picture who might help, such as a cleric, a social worker, or a support group like the Cancer Society, a Bereaved Parents group, etc.

Choices made by a patient, family and physician about treatment and medications are not always the right ones. It takes time and coordinated effort to find the right combination of medication and treatment for each patient's individual needs. If everyone works together as a team then the right choices are found more quickly. As a family physician, I believe everyone does his or her best at this time and if you come to the death of a loved one feeling you've done what you could and that I, as your family physician, have helped, then the death is an easier thing to accept for all concerned.

When I taught family practice to general practitioners a decade ago, I noticed, at first, an unconscious narrowness of mind when dealing with patient's emotional needs. This is not a condemnation but rather an observation. Many physicians are chosen by medical schools for their academic excellence rather than their interpersonal communication skills and aptitude for working with people.

Physicians are receiving more training in listening and communication skills today. Being human, they vary in their interest and evolving ability to attend to patients' emotional needs. The pre-requisite is having, and consciously taking, the time to be with the patient, wherever the patient is at. There is a learning curve to getting more comfortable with the wide variety of patients let alone with their dying and death. Good physician-patient communication and connecting at the human-to-human level leads to more dignified living until death for both patients and their physicians.

A personal note. I have changed my own personal ways of dealing with death and dying. I have learned many valuable lessons of living from my patients who were dying. I have also gone through soul searching to examine how my role as physician must sometimes change from that of curing patients to helping patients work with the choices available to them here and now. Personal friends, patients and reading books in various fields, including lifeafterdeath issues, have helped me to understand even more clearly that there is still loving, giving and productivity when patients live until their death.

Rev. Keith Nevel

I met The Reverend Keith Nevel over lunch at 'thebestkeptsecretintown' restaurant in the mid 1980s. This beautiful restaurant with its towering ceiling, quiet and aristocratic atmosphere was the backdrop for our discussion on the role of the clergy in working with people who have a terminal illness and their families.

The Reverend Nevel was the Anglican Chaplain at a palliative care unit. He was also the Consultant on Aging for his Diocese. He died several years ago. He was a person with great humor and insight that put me (and I assume his patients and their families) immediately at ease. When I asked Mr. Nevel the important features of chaplaincy he was very clear. "Be yourself above other things. If chaplains are uncomfortable with any aspect of aging or dying they cannot be very helpful to the people they visit."

The best a chaplain can do is to bring out the patient's own wealth of spiritual resources if the patient wants that to happen. Difficult situations, such as the death of someone you care for, challenges some people while making others feel vulnerable and alone. When they ask for our support we must provide it in an unconditional way.

Chaplains should be neutral religious figures except to members of their own particular church. Sometimes patients do not want to see me or any of the other chaplains and that is fair game. Humor allows me to ask them openly if they would like to speak with me; it also allows them to say yes or no, without feeling that I am putting them on the spot.

People all hope for a peaceful and pain-free death. I have found that the degree of peacefulness is often a measure of coming to terms with your own spiritual beliefs. I say this not in terms of church attendance but rather in how people use and understand their own spiritual resources. In my experience, I have found that people who have used religion for social reasons during their lifetime will benefit little from their faith at the time they are dying. This situation is reversible with enough time but requires people to seriously examine their relationship with God in the past and how they can strengthen their spirituality in the present.

Being an active member of a church does not protect us from difficult times, but rather, how we use the spirituality of our faith. People who have worked out their spirituality, whether in church, or not, can use their spiritual resources at time of great need. They may want to build upon their spiritual resources with a spiritual leader, like a chaplain, or they may do it by themselves or with others. Their attitude can often be expressed in the sentence: "Some people believe in the existence of God; others believe God."

People with no religion are often open to talking about spirituality because they haven't used the church as a social vehicle in the past. They are open to discussion and will debate their ideas and feelings and try to resolve any inconsistencies they may feel. One needn't accept a church's particular teachings to believe in God; what is important is whatever God may mean to that person.

One of the concerns of palliative care is the family. There is, however, a middle-class assumption that the family is always there to help patients with their death. Families often have major differences that are not immediately resolved when patients finds out they are dying. In fact, the family can often inhibit how we help patients. Our first priority is the individual patient but the family also requires our support and understanding.

We must remember that people often die the way they live. If they faced life's rewards and challenges with humor, insight, and concern for others, they will probably die in the same way. If they have been unsatisfied with their life, if they have major difficulties with their family, they will probably die in the same way. People do not dramatically change because they know they are dying. If anything, their dominant characteristics become even more evident.

The chaplain's role is to offer to help both the patient and the family resolve differences, individually and together. Sometimes someone else may be more effective in helping the patient and family such as a favorite nurse, a psychologist or a family friend. The principle here is to be flexible and meet the individual needs of the patient and family. I'll give you some examples from my own experience to make my points clear.

One of the major fears of people who are dying is that they are alone and forgotten. I visited one woman and before I could say hello she looked at my clerical collar and said: "Thank God I haven't been forgotten. Someone still cares." At times, my clerical wardrobe gives comfort to people who feel alone and my greatest joy is sharing time with them and listening to their hopes and fears without placing any judgments on them.

I mentioned how important humor can be. One man that I visited spoke about his religious experiences, good and bad. We talked about our faith, our view of an afterlife and his hopes for his family. He had not attended an Anglican service for quite some time but wanted to have communion before he died. I suggested that perhaps his family should share in this sacrament and he asked them to come the next day.

The man's wife had given him The Joy of Stress by Dr. Peter Hanson for Christmas and we were discussing the book when the family arrived. They were skeptical of my motives. They worried about an anticipated lecture on church attendance. To break the ice I mentioned Dr. Hanson's book and the man's wife asked me if I had read it. "I have, but I liked The Joy of Sex better." The family didn't know how to react until I began to laugh loudly and joyfully. The 19-year-old son joined in the laughter and we were able to talk openly and comfortably for the next half-hour. The communion was a joy to share with them. Like all church rituals, the communion service brings people together and makes a particular celebration real and concrete. It can be comforting and hopeful. It becomes a fond memory for the family after the person's death.

I receive a great deal more from the people I visit than they receive from me. During my own difficult times I look back on the lessons they have taught me. One deeply religious woman once told me about how her view of dying had changed over time. For months she had said that she was ready to die. After some introspection she discovered that what she had really meant was that she was ready for God to take her only on her terms. She would die when she was ready to go, and not a minute sooner. Her view changed. She became ready to go when God was ready to take her. Her change in perception was very comforting to her, for a heavy decision had been lifted from her shoulders. She died a most peaceful death.

I cannot speak too highly of the palliative care philosophy. The idea of spending more time listening unconditionally to patients is wonderful. Ideally, every member of the team works toward adapting the circumstances to the individual's needs.

One Roman Catholic woman had lived with a man outside of marriage for many years. She believed her actions to be 'sinful' and could not speak to the Catholic Chaplain or other members of the palliative care team about her guilt. When the team found out about her situation they began to ask casual questions that permitted her to talk if she wanted to. A simple question about her frequent male visitor like: "How is he doing today?" permitted this woman to bring up a painful subject without fear of judgment or a lengthy lecture.

I have talked about how families can sometimes compound problems rather than help resolve them. I once spent many weeks talking with the young mother of an eight-year-old girl. The mother was dying of cancer and felt she had a major spiritual problem. After some discussions we found that her real problem was her father, who used her faith against her. He told her that if she was really faithful she would not have cancer. He used Biblical quotes to show her that she was unworthy when I was trying to help her see her own spiritual strength.

The history of this family included child abuse and the power of the father over this young mother was so negative that my efforts did not give her the great sense of peace and comfort she deserved. Fortunately, however, she was able to plan ahead for her daughter's future by arranging a guardian for her. This gave her some peace of mind. The situation was frustrating for all members of the palliative care team because we could not overcome the power the woman's father had over her mind.

Fear of the afterlife is another area that makes some people's deaths difficult. People who believe they have committed major sins may wish to confess them to a cleric in hopes of getting to heaven. What has surprised me most is that many of these confessions deal with decisions or mistakes someone has made decades ago. The fear of death reminds them more of their errors than of their successes.

One woman, about 55 years old, confessed to hating her stepfather. Her guilt made her fear death and what her life-after-death would be like. After we talked for a while, I found that her stepfather had abused her as a child and that her mother, knowing of the situation, had done nothing to protect her. She professed great love for her mother but after more chats she admitted her real hidden anger and hate. This type of confession and the talks we had afterward helped her see her life and feelings more honestly and she was better able to deal with her own death.

I have a few thoughts for people interested in chaplaincy work with people who have a terminal illness. The most important skill is to be yourself. Remember that the people you are dealing with are the same adults they were before they found out they were dying. Treat them with the respect they deserve, not paternalistically.

Perhaps a criticism of palliative care teams is permitted. In my own experience I have found that patients who are strong, independent and know what they want are treated differently from patients who are more ill and therefore more dependent. Staff of palliative care units give a great deal of themselves because of the nature of their work. They want to give everyone the gift of a peaceful and dignified death. When their efforts are turned down by someone more strong willed, the staff may begin to pay less attention to them than to patients who are more dependent and eager for staff's company. This is quite natural but a tendency that must be observed and addressed so that if patients change their mind about how much care they want, the option for more care is always there.

My last suggestion to caregivers, especially chaplains, is not to take yourself too seriously. Sometimes there is not enough humor in our work for we are dealing with dying people. People in the last stages of life have much to offer us. If humor can help us to put our lives and our circumstances into a larger perspective, even in the midst of the radical changes in our lives, then I am all for it. I think we can help families look back on this period in their lives with a touch of humor added to the memories of love, talking, sharing, anger, fear, frustration and every other emotion that is such a part of living.

Justin, 7 Years Old

Many of the suggestions in this book hold true for children as well. A few extra points are illustrated by Justin's story of recovering from surgery.

Justin is 7 years old and was in the hospital for surgery on his elbow which he injured in a soccer game. He also has a life threatening condition. As always his parents, Doreen and Tyrone, had talked with his physician about what would happen, the after-care situations that might come up and what services were available at the hospital and for home care for both Justin and his family.

They answered all of Justin's questions honestly and in simple terms. They also gave him information that he didn't know to ask for that would give him some comfort and relieve some of his natural anxiety. They never overwhelmed him with long answers but broke down the questions into manageable chunks. They'd ask him to repeat, in his words, some of the explanations to make sure he understood what they were saying. Before the surgery and after, they used library books about hospitals, surgery and recovery to help him understand he was alone in having certain feelings and fears.

Whether in the hospital or at home, Doreen and Tyrone never gave Justin a promise they couldn't keep. They told him what to expect, how long it would probably take and if it would hurt. They didn't want him surprised or frustrated.

When Justin cried in fear, anger, pain or frustration, his parents comforted him and helped him get through. They used distractions (e.g., music, television, books, stories, laughter and games) to speed along the long waits during appointments and his recovery. They brought in friends and family to provide company and further distractions. To help Justin cope with any pain that his medication was handling or for particularly anxious moments, they used techniques like visualizations (having Justin close his eyes and take him on a peaceful adventure he could imagine in his mind), deep breathing, or squeezing a hand.

Children and adults feel a loss of control when they are sick or recovering. By letting Justin choose which arm a nurse would use to get a blood sample, or what foods he could eat or which friends to invite over, Doreen and Tyrone gave Justin choices and a sense of control during a difficult time.

Sara and Long Distance Care

Julie's mother, Sara, lives a thousand miles away in her hometown. Julie is worried that her mother, now in her early 80s, living with cancer, will not be well cared for when her physical or mental abilities diminish. There are no siblings living near by and Sara relies on Julie's semi-annual visits to help her arrange medical, legal and financial affairs.

Rather than wait for an emergency to happen, Julie has done the following.

She has spent the past several years talking with her mother's friends and neighbors to create a support circle (similar to what is described later in this book). A next door neighbor of many years has agreed to check in on Sara each day to make sure she is okay. If a problem arises, the neighbor will call one of several members of the support circle who has agreed to look after medical, legal or financial matters. If Sara needs some extra physical support at home, the circle has agreed to coordinate care with the local home care program and family physician with regular telephone direction from Julie. The circle members have also agreed to make regular visits during times of need so that no single member of the circle has to feel overwhelmed with Sara's care.

Julie has also made visits with Sara to her family doctor, local bank, and lawyer to make necessary arrangements and pass along Julie's telephone number in case of emergency. Sara has made Julie her power of attorney for health care. At present, Sara is able to maintain control over her own legal and financial matters.

In a more recent visit, Julie has gone over legal, funeral and financial matters so that in case of emergency, she knows where Sara's investments are kept, her Social Insurance Number, health numbers, insurance policies, will, credit cards, what funeral plans have been made, etc. Julie knows where all the important documents are kept including birth certificate, marriage certificate, veteran's papers for her father, etc. She has also copied a directory of important telephone numbers so that she can be in immediate contact with the people who can best help Sara at any given time.

Sara has made copies of her home, car, and safety deposit keys. When the two visit together, they go over these matters but spend more time on sharing memories, visiting friends and nurturing their relationship.

"It isn't easy living so far away. We are doing the best we can but it is scary for both of us. I call almost everyday for a quick 'catch-up'. I searched for the best long-distance telephone rate I could get. We send each other 'care' packages with little gifts to remind each other of how important we are in each other's life. We don't have a perfect relationship, of course. There are days when we don't talk to each other because of a disagreement. She sometimes thinks I am trying to take over her life and I sometimes think she isn't doing enough to take care of herself and be safe. I worry that she might die alone in her home and she worries about dying alone in a hospital or nursing home. There is so much to work out but we are trying and we don't give up on each other."

Victor Gascon

In 2000, Lisette Larche died at home surrounded by family and friends. Her son-in-law, Victor Gascon, wrote her a letter near the third anniversary of her death to describe the impact of her last days with her family.

Dear Lisette,

Early this morning I was working in my garden and noticed that I had a solitary perfect white rose on the rose bush. It immediately made me think of you as this rose was so perfect and in the very same spot where I picked such a rose for you the night you died. Tender memories came flooding back to me and then I felt peace knowing that this one was probably from you. Shortly after my time in the garden I got a call from Harry van Bommel and your name came up. Ironically enough, he asked if I would write something about when we brought you home to die.

It's almost been three years now since you passed away. Actually, in a couple of days from now it will have been three years that we brought you home from the hospital knowing you were going to die with us. I still remember clearly the day the doctor talked to Shawn, Michael Heather and me in the doorway of your room to tell us that you had terminal cancer. Your children were so brave and tried so hard, by asking the doctor about a liver transplant, chemo therapy, blood transfusions and the list went on. Sadly, all was in vain.

I will never forget the lump I had in my throat knowing there were no options left and that the end was so very close. The only thing I could think of was to bring you home and out of that sterile, cold environment, where all those around you were also fighting for their lives. I wanted you to be in your old room where you had lived with us for the past five years and to give you a little bit of life to bring with you on your last voyage. I wanted you to be able to hear us live, by hearing your grandchildren, Bill, Corey, Kyle and Shayla laughing and playing, the dogs barking, the banging of the cupboard doors that only your son Michael could do so well, the smells of the kitchen, to have all of us, including your brother Uncle Ray and his wife Aunt Claudette and your friend Sashiko from Japan living with you during your remaining moments.

The day you were coming home was a very hectic and crazy day. Everything was coming in at once: the adjustible bed, the oxygen, the drugs, and the visit from the palliative care nurse. Everyone was cleaning and rushing around wanting everything to be perfect for you. You were certainly the guest of honor.

Then it happened. You got home late that night by ambulance and went to your room. Shortly afterward, I played some of your favorite songs on the piano and that is when you said: "Thank God, I'm home." I remember playing with tears running down my face and Uncle Ray's hands on my shoulders giving me the courage and support to do this for you.

The next few days were certainly eventful. Friends were dropping by bringing all kinds of food so that we could spend time focusing on you. My dear friend, you tried so hard. You fought so hard till the last minute but the cancer was winning and you were going fast.

The palliative care nurse came twice a day to see you and to give us support. She helped us prepare for the inevitable. Uncle Ray was so good. He coached us to make all the funeral arrangements ahead of time as he knew we would probably be in no shape to do so once you had passed away. Plus it kept us busy, working on sometime practical and it also helped us accept the fact you were dying.

I'm sure that even though you were embarrassed receiving personal care from your two sons and your daughter, you were proud of the love they had for you. Shawn, strong as a horse would pick you up in his arms so that Michael and Heather could clean and put on fresh clothes. They did it with so much care and love, constantly doting over you to make you as comfortable as humanly possible.

I will never forget our last conversation when I sat with you giving the others a little chance for some shut eye. People might say that you were unconscious but I felt you could hear me. I told you that it was okay to let go so that you would stop suffering a long-drawn out goodbye. Then seconds later, you started breathing hard so I asked you to hang on while I called everyone to your side as we all wanted to be with you when you left. Then, when you took your last breath, I realized that I had forgotten your grandson, Bill, in the living room so again I asked you to wait. I raced Bill in his wheelchair down the hall to your bedroom and lifted him from the chair to lay down beside you ­ that is when you left us. The love around you was just too beautiful. It was beyond words. The bedroom radiated with love.

We all cried and hugged your body and then Michael, Shawn and Heather washed you and dressed you in a white night gown. I went into the back yard needing time to cry and as I raised my head looking at my climbing rose bush, at eye level grew one solitary white rose which seemed to radiate beauty. I cut the rose and placed in on your peaceful body as it seemed like the right thing to do ­ "a rose for a rose".

My dear friend, I thought that bringing you home to die was a little gift from us to you but really it was the other way around. Thank you so much for giving us these precious days of your life as I know these memories will stay with all of us for the rest of our lives.

Miss you!



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Family Hospice Care:

Pre-planning and Care Guide

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