6: Information Needs

Chapter 13: Medical Questions to Ask and Answer

Introduction to Information Needs


Questions Physicians Need Answered

Questions About Tests

Questions About Medications

Questions To Your Physician About Your Condition

Questions Upon Entering a Hospital/Hospice/Other Facility

Personal Medical Record

Recent Medical History

Prescription Drug Record

Medical Expense Record

Introduction to Information Needs

Some people like to know everything about their medical, legal and financial situations. Others do not. Adapt the following five chapters to meet your own needs as either the patient or the family caregiver. If you are not interested, try to find someone who is and who can help you understand those portions of medical, legal and financial information that is important for patient and family support and comfort.


The following forms and lists of questions can become the patient's personal medical file. Records kept by physicians, hospital and insurance companies are difficult to get, therefore, they are little use in a medical emergency.

Photocopy the forms you wish to use.

Note: The 'you' I address in these chapters can be either the person who is ill if you have the energy and concentration to work with these forms or 'you' as the family member or friend acting on the patient's behalf.

Having your own medical file allows easy access to information for new physicians and others who need it quickly and accurately. Even if you have been a patient at a hospital before, it may take hours before your record reaches a physician and he can use it to help make decisions. As it is, maintaining and storing medical records is low on the funding list of our medical system and we belong to a very mobile society where it is difficult to get records transferred from one facility to another. Therefore, maintaining your own records can save valuable time in emergency situations.

Depending on a physician's style, medical records and taking a medical history provide the information for up to 85% of a diagnosis. The other 15% comes from a physical examination and tests. An updated medical record is very important when you see a new physician but even more important during an emergency situation.

I suggest you use a black pen to fill in the sections of the forms that are unlikely to change (your name, birth date and childhood illnesses). For information such as addresses and telephone numbers use a dark pencil so that you can easily change the information when it is necessary. Fill in only the information you want to. Information that you consider too personal can be left blank. Remember this is your medical file and you choose what goes in it. If there is information you do not know (e.g., when you had the mumps), put in a question mark and your best recollection (e.g., about 1943?). Have these forms with you whenever you go to a hospital, other medical care facility or a new physician.

Filling in forms is boring and it may also make someone feel less comfortable about her or his medical situation. Always keep in mind the uniqueness of this situation. We are dealing with someone who has a terminal or life-threatening illness. The forms are meant to be helpful but too much emphasis on them can make living until death a "big production". These forms (and the list of questions) have different uses depending on how long someone has been ill. If they have just been diagnosed as having a terminal or life-threatening illness, then these forms can be very useful. If the person has been ill for a long time and under the care of the same physicians, then filling in some of the forms in great detail is not necessary. In any case, it is up to the patient and family to decide how much effort is put into filling in these forms. If patients want the forms used but cannot fill them out themselves, a family member or friend can help them.

There are many suggested questions in the following pages. These questions are not meant to second guess the caregivers but rather help the patient and family who want to take an active role in their medical treatment to understand what is happening. These questions are a way to develop a trusting, working relationship. You will not be able to ask all the questions listed because many will be answered for you or because there are time constraints. You can ask some of these questions of physicians while some of the other questions are best reserved for other professionals: nurses, pharmacists, therapists and others. Also the references at the end of this book provide you with information on tests and procedures, illnesses, medications and more.

Each individual has specific needs but also individual responsibilities. The purpose of getting medical information is to better inform yourself before you have to make medical decisions about medical treatment.

Physicians and other caregivers can use the following forms and questions to encourage participation by their patients and to minimize wasted time. For example, if a patient completes a medication chart and then brings a copy of the chart and their medications to a new physician, there is little time wasted in examining and listing the drugs in the physician's file. Time can be better spent talking with the patient.

Chapter 16 on Financial Planning includes a Personal Information Record that can be photocopied and included with the medical records. It provides information that might be required by hospital/hospice administrators.

Questions Physicians Need Answered

Depending on how often your various physicians see you, they require the answers to some or all of the following questions. If you or a family member or friend can, write down the answers for the physician. Some physicians prefer to receive verbal answers to their questions but you can still use the written answers as a reminder of important points.

What specifically concerns you about your condition today?

What is the history of this condition? (Your Medical Record can add to the verbal information your new physicians will require.)

Where in the body did the pain or symptom begin?

When did it start (date and time)?

On a scale of 110 with 10 the worst pain you have ever had (e.g., broken arm, and appendicitis) how would you measure your pain?

Describe any other symptoms you have had?

What were you doing at the time of the pain or symptom?

To what degree does your pain or symptom limit your normal activities?

How long does the pain or symptom last? (an hour, all day)

Is the pain or symptom constant or does it change?

Does the pain or symptom stay in one place or spread out to other parts of your body?

What makes the pain or symptom worse?

What makes the pain or symptom better?

How do the following things affect your symptoms: bowel movements, urination, coughing, sneezing, breathing, swallowing, menstruation, exercise, walking and eating?

What do you intuitively feel is wrong?

Do you have any other information that might help me?

Questions About Tests

Studies have shown that patients who know the physical effects of a test or treatment are less afraid and recover more quickly from the procedure than patients with little or no advanced information. Although caregivers may not have had a particular test themselves, they can usually provide fairly detailed information based on other patients' experiences and the medical literature on the specific test or treatment. It is important for a patient to understand why a physician has recommended a test and how the test is done. The following questions can be asked of a physician, nurse or technician to help the patient decide whether or not he will consent to the test.

What is the purpose of this/these test(s)?

What do you expect to learn from these tests? Will the results change my treatment in any way?

What will happen to me if I choose not to take these tests?

What will the test feel like (any pain or discomfort)?

What are the common risks involved in these tests?

Are there any after effects of these tests?

Can my spouse/child/friend come with me? If not, why not? (The medical world is slowly changing to allow someone to be with the patient during tests. This change is similar to how fathers now come into the delivery room.)

Can I return home/to work after the test?

When will I get the results of these tests? Can I see you to go over them with you?

What are the chances of error or false positive/negative results? (Some tests have a high incidence of "false positives". Often tests are not definite but can help physicians know if they are on the right track.)

What are the costs involved, if any?

Other questions:

Questions About Medications

You may ask your pharmacist or physician the following questions. Some of the information, however, is listed on the medication or included with it. Patients are responsible for thinking about these questions before they start new medication. Keep in mind that people react in different ways to medications or may not follow the instructions carefully. If you have many medications, take the time to fill in a medication timetable (see Medication Timetable form).

Some of the answers to the following questions can be found in the pharmaceutical textbooks listed in the references. If your pharmacist or physician cannot answer your questions with enough detail, check with one of these texts.

What do the drugs actually do inside my body?

What is the name and purpose of these drugs?

How often do I take them each day and for how many days?

What food, liquids, activities and other medications should I avoid when taking these drugs?

What are the effects of mixing these drugs together?

What are the common and less common side effects of these drugs?

How can these side effects be controlled?

When should I return to give you feedback about the drugs are working?

What happens if I choose not to take these drugs?

What are some alternatives to taking drugs for my condition?

Is there a less expensive generic version of these drugs?

What special storage instructions should I follow? (Pharmacists usually label medication with specific instructions but you should be sure that the labels are present.)

Can this prescription be repeated without coming to see you again?

What are the costs involved? (Many prescriptions are never filled because patients do not tell their physicians that they cannot afford the medication.)

Do you know if my medical insurance covers any of these costs? (Ask your pharmacist or insurance agent).

Other questions:

Questions to Your Physicians About Your Condition

Once you are examined and appropriate tests are done you talk with your physician about your condition. Your family physician, as your advocate and mediator in the medical world, should help you understand the medical system. Why and how are tests done? What do the results tell you? What are the treatment alternatives? What is the prognosis (prediction of the probable course of a disease) for your condition? What types of support (financial, physical, emotional, spiritual and informational) are available?

Try to get your family physician actively involved if you have trouble understanding or talking to your specialists. Always make sure that you understand what your physicians are saying. It is common for them to use terms you may not understand. Physicians had to learn what these terms meant, so they can discuss them with you and help you understand them too.

In order not to waste your physician's time, it is important to ask specific questions. If you know your family physician well, you might give him a copy of the following checklist of items that you want answered, especially if your situation has changed since your last visit.

Fill in the answers to your questions so you do not have to repeat the questions later on. Also ask for reference material that might answer some of the questions for you. This reduces the time commitment of your physician and allows you to return later with even more specific questions and concerns. There are times, of course, when your physician cannot give you specific answers because your disease may not be predictable. However, your physician can offer some educated guesses with recommendations of where you can go to get further information.

The following are some questions that might help you understand your condition better. You already know your diagnosis but you may want to know more.

Based on your experience and the medical literature, what is the usual progress of this disease?

What can I expect next?

What other parts of my physical and mental abilities will be affected?

What happens if I choose not to treat this illness through medication, surgery or other treatments?

What are the longterm effects of this illness?

Will I have pain and/or other symptoms as the disease develops?

If yes, what treatment do you suggest?

How does the treatment work?

How will I evaluate its success or failure?

How long after I begin the treatment should I see you again to report any progress?

How often will I need the treatment?

What are the side effects to this treatment?

What are some of the medical and nonmedical alternatives of these treatments?

What is an educated guess as to how long I have to live?

Other questions:

Questions When Entering a Hospital/Hospice/Other Facility

When patients enter a hospital, hospice or other care facility, it is important to remember that they are there to receive a service. They remain in control of that service by consenting to, or refusing, the tests and treatments offered them.

If English is not your first language, ask if there is anyone who can speak to you in your own language and help you understand your medical care. Make sure you have a family member or friend present during all conversations that require consent.

What is the name of the admitting physician?

Who is the physician in charge of my case and how can I reach him or her?

Is the physician in charge of my case a specialist, intern or resident?

Does the facility have special rules and regulations I should know about?

What is the discharge procedure for leaving this facility?

Is this a teaching hospital, and if it is, will anyone request that I participate in a research or education program? (You have the right to consent or refuse to be part of any research or education program.)

Does the hospital have a patient advocate office or social worker who can answer my questions about hospital procedures?

What costs are involved in my hospital stay, if any?

If I have chosen someone as my Power of Attorney for health care decisions, how do I make sure they are accepted as my legal spokesperson if I cannot speak for myself?

Other questions:

Questions When Leaving a Hospital or Other

Facility to Go Home

When patients leave a hospital or other facility to go home there is usually a discharge planner involved. This person is responsible to ensure that patient's leaving their center and going home do so as comfortably and safely as possible.

Here are some questions that might help ease the transfer:

ß When will the actual discharge home be? Is that in the morning or the afternoon of that day?

ß Will the family take the person home or do they need an ambulance?

ß What home care supports will be in place? How can I make sure, in advance, that those home care services will actually start as promised? [NOTE: Often what is promised at the hospital is not possible within the community home care program right away. The hospital bed you need, the visiting home nursing, or the pain management medications may all not be ready as quickly as the hospital would like. You need to find out who the home care case manager for your case is and speak to them BEFORE the discharge or you may be left without supports for days.]

ß Do we follow the same medication regime at home as we did here or go back to what was taken before admission to the hospital? Who will provide the prescription(s)? Can they be provided a day in advance so we can make sure to have them at home when we arrive?

ß What happens if we need to come back to the hospital? Do we have to go back through emergency or can we come back directly to this unit? [Some hospital palliative care programs, for example, allow for direct admission back to the unit in case the patient can no longer be cared for at home.]

ß Will the physicians here speak directly with our family physician to answer any questions? When would be a good time for our doctor to call and what is the direct number?

Personal Medical Record

Use the following headings to create your own record.



Health insurance


Policy number

Policy owner

Name/telephone number of agent (if applicable)

Date of birth

Blood type

Rh factor

Language spoken

Language preferred for reading and writing

Name and telephone number of biological father and/or mother (this information can provide necessary genetic history)








Substances (e.g., dust, grass)


For smoker

How many years have you smoked

Average daily amount (e.g., 20 cigarettes/day)

If you quit smoking give date

Alcohol/nonprescribed drug use

Type(s) of alcohol/drugs

Amount a day or week

Do you exercise regularly? If so, what activity and how often?

Average number of hours you sleep every night

Religious affiliation, if any? Any religious or cultural limitations to care, (e.g., Jehovah Witnesses cannot have blood transfusions, some Jewish people require kosher meals, etc.)

Next-of-kin (name)






Family physician (name)



Hospital affiliation

Specialist physicians (name of principal specialist; for other specialists, use a separate page)



Hospital affiliation

Spiritual leader



Optometrist (regarding lens prescriptions)




Dentist (name)



Pharmacist (name)



Any physical limitation due to an injury or disease, e.g., arthritis, paraplegia, loss of limb or other limitation?

Difficulty with vision (give details)

Left eye

Right eye

Do you wear contact lenses or glasses?

Difficulty with hearing (give details)

Left ear

Right ear

Do you wear a hearing aid

Do you wear false teeth

The following charts on Childhood and Adult Illnesses are guides so you can create your own with enough space for the answers.

Childhood Illnesses

Condition Date Complications
Chicken pox
Whooping cough
Rheumatic fever
Rubella (German measles)
Rubeola (measles)
Scarlet fever
Strep throat

Adult Illnesses

Condition Date Details
Alzheimer Disease
Gynecological problems
Heart condition
Multiple sclerosis
Past operations

Recent Medical History

This file keeps your Personal Medical Record history up-to-date.

Copy out the following two sections as often as needed.

Visits to Physicians

Date Physician's Diagnosis Treatment Results

Lab Test Results

Date Test Physician Result & Suggested Treatment

Medication Timetable

If you are taking various medications, a Medication Timetable is very useful in helping you to remember what medications to take at what time during the day. Use a pencil to fill in the medication names, because your prescriptions will probably change over time. This timetable is for your personal use and not meant as a detailed list of your prescriptions (see Prescription Drug Record form).

Time (a.m.) Medication(s) Time (p.m.) Medication(s)
1:00 1:00
2:00 2:00
3:00 3:00
4:00 4:00
5:00 5:00
6:00 6:00
7:00 7:00
8:00 8:00
9:00 9:00
10:00 10:00
11:00 11:00
Noon Midnight

Prescription Drug Record

During treatment for a terminal illness, it is quite common to have your prescriptions changed from time to time. The following record allows you to record the kind and dose of medications you have been prescribed, how often you were to take them and the overall result of the treatment. The date and physician's name is useful in emergency situations when your regular physician is not available to help you.

Date Started Drug Dosage Physician Result Side Effects

8/1 Tylenol #3 10 mg 4/day Dr. Kildair Relief After 5 hours but returned 3 weeks later

8/23 Tylenol #3 20 mg 4/day Dr. Kildair Relief After 6 hours

Medical Expense Record

Financial records are important to keep even if your costs are covered by insurance policies. Computer mixups are common and without adequate record keeping you may have to pay an unexpected bill. Keep all receipts plus records of other costs like traveling, eating out, etc., as some of these may be tax deductible (e.g., mileage to and from treatment, parking at treatment centers). Keep them in a file, box or envelope. Photocopy the form below or use a simple scribbler or note pad to keep a record.

Date Treatment Dr/Hospital Paid to Insurance Paid or I Paid

Chapter 14: Home Care Tips

Preparing for Someone at Home

Visiting Someone at Home

Family and Friends: Other Things You Can Do

Patients: Letters Written to Your Family, Friends and Colleagues

Preparing for Someone at Home

There are many books on the subject of home care and what family members can do and learn to make the situation more comfortable for everyone involved, including the companion book to this one, Caring for Loved Ones at Home. The following are a few suggestions:

Remember that people do not change much in character because of their illness. If they were easy going, caring and enjoyed a good joke before their illness they are probably the same now. If they were unsatisfied with their lives, not easy to please and uncommunicative, they will probably not change a great deal because they are dying. Therefore treat them with respect and give them the opportunity to direct your involvement in their care.

Do not try to force someone to eat. People need control over their lives and should be encouraged to make their own decisions. Patients know that food is important to living. Their diet may be prescribed but a hot plate, small cooler or refrigerator by the bed allows them to eat small meals when they are hungry. Have lots of liquids available. The person, at some point, may only eat what they want or nothing at all as their body no longer needs the nutrition. This is perfectly natural. One day they may not want anything, and the next day they do. Allow for this flexibility.

Daily baths, massages and general hygiene are important for comfort but also to prevent bedsores for bedridden patients. Bedsores are very painful and almost always avoidable.

If conditions permit, encourage patients to decide if they wish to smoke, drink, walk around and have visitors. Even if these activities are tiring or unhealthy, the decision must rest with the person who is dying unless it harms someone else.

Although family members often want to do what is best for their loved one, they must not forget about themselves. If you feel like you are being used, say so. If you are uncomfortable with decisions that the ill person has made, be honest about your feelings and arrange for someone else to help.

Have a bedside bell or other device available so that the person in bed feels they have direct access to you. An ability to make contact, at their discretion, is crucial for the emotional confidence of people who are ill.

Have music and television available. People who are great sports fans, for example, may enjoy watching a game on television that allows them to be involved in something totally different from their own situation.

Plastic bedpans and vomit trays are not as cold as metal ones.

Perhaps you can move the bed to the living room, den or other area where the person who is ill feels more a part of the family and every day activities. If you live in a multi-level home you might relocate the patient to a ground floor room. If the bed is near a window the person can see what is going on outside.

Either get a hospital-style bed or raise the one you have so that the people helping do not hurt their backs.

For the caregivers at home, get all the help you need from family, friends and professionals. Most people do not know what to do under these circumstances so they need to know how they can be helpful. Ask for specific help (e.g., grocery shopping, walking the dog or reading to the patient).

Borrow Caring for Loved Ones at Home which gives you suggestions about how to change beds when someone is still in it, how to move someone, how to bath a person in bed, how to provide good meals that discourage constipation or nausea, and other useful tips.

Visiting Someone at Home

(Feel free to copy this section to give to visitors.)

Many family members and friends find it difficult to visit someone who is very ill. If the person is in the hospital or other facility, it may be more difficult for some family members and friends to visit because of past negative experiences they have had in a hospital.

It is natural to hesitate in seeing someone you love or care about who is in pain or is seriously ill. Here are some suggestions that may help:

If you care about the person then go and visit, even if you are not great friends (e.g., a colleague from work). The gift of your presence is as important as anything you might say or do. Your presence gives the patient a sense of belonging ­ of being part of a group and community. This helps the person remember that their life matters to others.

Check with the patient, the family or nurses' station to see when the best time is to visit. You don't want 20 people arriving one day and no one coming the next.

Remember that the person you care about has not changed. She may be your parent, your child or a dear friend. Her personality, the qualities you admire and love, has not changed because she is ill or tired. Respect her rather than baby her. Include her in decisions. Ask her advice. She will probably change less than you will.

There is nothing as comforting as a touch. If the person gives you permission (not everyone likes to be touched) and if you feel comfortable yourself, sit close to the person, hold her hand or give her a hug. Your touch and the caring in your eyes express more than words ever can.

Use open-ended questions to help the patient decide what he wants to talk about (if he wants to talk at all). Questions like: "How are you feeling today?" "Are you comfortable?" "I love you so much. Is there anything I can do or say that would help?" Try to be at the same eye level as you talk, or if the person is lying down, it may be easier for them to look up at you.

Perhaps you can show or give this book to a family member or friend to help them understand what is happening to them and to the people around them. A small section of the book may open up the discussion in a non-threatening way. A book like this may or may not be read but it gives information to people who are naturally curious.

Don't prepare a speech. Admit your fear of hospitals or sick people. The patient needs to feel useful and if you are honest she can help you overcome some of your fear so that you can have a really good talk.

Be yourself. Act as you always do with the person. If you are naturally quiet then avoid telling all the latest jokes from work. If you normally chat about old friends then continue to do so. If you are naturally outgoing don't become somber and serious. People need stability in their lives and family and friends can offer the greatest emotional stability.

Let the patients vent their anger, frustration and despair. Their feelings are real and they need to get them out. It may have nothing to do with their illness but could be their treatment, their employer's attitude, old friends who no longer visit, or an acquaintance who owes them money but is nowhere to be seen. Offer to help if you can help improve the situation. Beware of getting too involved in an 'unfixable' situation ­ not all conflicts can be resolved before a person dies. Try not to become part of the conflict by choosing sides.

It is often not helpful to compare the patient with other people who have gone through similar things. It minimizes his or her own feelings. Some examples of other people's successes in similar situations may be helpful at times when the person is looking for inspiration rather than just the comfort of someone to listen to them.

It is all right to cry and show your own feelings. You don't have to be strong all the time, for that makes the patient dependent on your strength. If you cry and allow him to be strong it is a normal relationship and one that benefits both of you.

Don't hide behind a gift or card for it is your presence that is the gift. You can send a card or gift if you are unable to visit, or between visits, to let the person know you are thinking of her.

Try not to stay too long. Two short visits are better than one long one. This is especially true if the person tires easily.

Remember the other family members. They need your emotional support, too, and practical things like driving, food, babysitting, staying with the patient for a while, and running errands can reduce their stress and provide them with the precious gift of time.

The gift of just being with someone, often in silence, may be difficult at first but offers you and the person you are visiting the comfort of companionship and the opportunity to think quietly and peacefully about what is truly important.

Remember that the person's sense of time is different than yours. While we visit someone, we are likely also thinking about what to cook for our supper, how to get the kids to the hockey practice on the weekend and our vacation next summer. The person we visit has a much more intense sense of the present time. If you appear rushed or distracted, it is a sign that your sense of time is not the same as theirs. Before entering their room, make a conscious effort to join them in their sense of the importance of right now.

If you get permission to bring children with you, prepare them for what they are likely going to see, hear, and smell. Children are wonderfully curious and ask a lot of questions. This can be a great gift when their curiosity is met with honest answers. If they are hesitant to visit, ask them why and try to truly understand their perspective. If you believe that they would benefit from the visit, have them stay for a short while for the first few times until they get used to the new situation. Again, answer their questions and concerns as honestly and completely as they want or need.

Family and Friends: Other Things You Can Do

Before the Person Dies

If you are a close family member or friend, offer to help with estate and funeral planning if you feel this is appropriate.

Encourage the person to resolve any unfinished business, including family or friendship conflicts that may exist. If such resolution is possible, it is a powerful completion to one's life and a legacy of fond memories for grieving family and friends.

If appropriate, help the person plan the surrounding environment e.g., have music/food/films/videos handy that the person enjoys, arrange to have visitors arrive in smaller numbers, move the person to a more comfortable room or to where there is more activity they can join in. These little things give a person a sense of control, peace and comfort.

After the Person Dies

Attend the funeral. Again a hug can mean more than standard comments like: "He lived a long life." (Not long enough for me.) "It is better this way." (Not for me!) "She would want you to be happy." (I can't be happy now.) "You did everything you could." (Maybe I did, but she is still gone and it hurts.)

The family will have lots of visitors for the first week or two. Plan to be there near the month anniversary and after that too. Offer to listen.

Do not expect the pain of losing someone dear to end after a few months. It can easily take one or more years before anniversaries, birthdays, songs, smells, faces in a crowd, favorite foods, found letters, clothes, photos, gifts and so many other things no longer bring tears of sorrow and loneliness. Be patient with yourself and others.

Let the grieving person talk repetitively about the person who has died, their illness, their life story and the person's own grief. People often need to repeat over and over again the sequence of events leading to a death or repeat memories that are especially important. Talking relieves anxiety and the inner pressure to not forget the person. It makes the situation real when they wish it wasn't. Try an open-ended question to encourage such communication.

Do not be afraid to mention the dead person's name. People need to remember and don't want to go through life as if the person never lived. Even if the mention of the name brings tears it is a most valuable gift.

If you know of support groups that might help, provide the information without forcing the people to go. Information is useful and allows people to decide what needs they have. (See the appendix with a list of possible support groups.) However, if you are very close to the person, no support group is more important than your friendship. You have an ongoing relationship and history with the person that is vitally important. Nurture that relationship any way you can that benefits you both.

Patients: Letters Written to Your Family, Friends and Colleagues

One of the very special gifts someone who is dying can give to her or his family, friends and colleagues is to write a note or letter to them. It could be read before or after the death.

You know all too well the stress and grief that your family and friends will have when you die. You also know how cherished a note or letter would be as a gift to them. Words of encouragement, understanding, friendship and love can help them through a difficult time of grieving.

For those of you with children a letter, cassette or videotape filled with your love, thoughts, hopes and dreams for your children is a lifelong expression of parental faith and love. These are not easy to do, especially for those very close to you. You do not need to write a long letter or a diary. My mother gave my father a book of Norman Rockwell prints and signed it: "All my love." It said it all perfectly. It was the last thing she wrote.

When my father was dying, he had my sister write out numerous cards for him that he signed. It was a goodbye to his family and friends. It drained him but he wanted people to know he was thinking of them; just as they were thinking of him. He asked my sister to write a special wedding card for my fiancée and me that I received seven months later on the night before my wedding. The card brought sobs of sadness, tears of joy and great love and pride. It helped me deal with all my emotions about not having my parents and grandfather at my wedding the next day. My father's card was a special gift shared between my father, my sister, my wife and myself. The next day was glorious and filled with great love, laughter and happy memories.

Chapter 15: Legal and Moral Rights and Responsibilities

Definition of Legal and Moral Rights

Patients' Rights and Responsibilities

Caregivers' Rights and Responsibilities

Families' Rights and Responsibilities

Powers of Attorney and Living Will


Withdrawing or Preventing Life Supports

Negotiated Death

Legal Definition of Death

Legal Concerns After Death

Complaints and Lawsuits

Medical and Hospital Insurance

Definition of Legal and Moral Rights

There is a difference between the legal and moral rights of patients, family members and caregivers. Legal rights have their source in law. Moral rights have their source in generally accepted principles of care and respect that may, or may not, be enforceable by law.

Legal rights are constantly changing through legislation and case law. Legal rights are interpreted differently in each province and territory in Canada and each state in the United States for each specific case and, therefore, I cannot list your specific rights. I will give you some general concepts of your rights but you will have to verify the specifics within your province, territory or state.

Moral rights are very subjective and cannot always be argued in courts. When issues are brought to court, the resulting decisions about what is acceptable care and respect of patients depend on the laws of that specific jurisdiction as well as the details of each particular case.

To make sure of the legal rights within your jurisdiction check with: (1) your family physician or local hospital; (2) the provincial/state medical licensing and regulatory bodies (in Canada, with the provincial College of Physicians and Surgeons or in the U.S., the state medical boards); (3) relevant medical, professional and consumer groups listed at the back of this book; or (4) for more complex issues, with a lawyer specializing in your area of concern.

Since the person with a terminal or life-threatening illness is the only person involved in all aspects of their medical care (tests, examinations, operations, etc.) they must take the responsibility for making sure they receive the care and respect they deserve. Where they cannot act for themselves, a family member or close friend can act as their advocate.

American and Canadian laws stem mostly from the same English Common Law, except in Quebec, Arizona, California and Florida, and have many points in common. However, the specific provincial, state and national laws and procedures have developed differently. It remains up to individuals to determine if the following rights and responsibilities are applicable to their own situation.

Patients' Rights and Responsibilities

Patients' Legal Rights

The right to be adequately informed about their illness so that mutually agreeable decisions can be made.

The right to consent or refuse any treatment as long as the consequences of this action are not harmful to others (e.g., authorities must treat some contagious diseases). This consent is based on an understanding of the nature and risks of the treatment and any alternatives to it. The patient must be told if a treatment is experimental and the consequences of such treatment. The patient can always refuse to participate in experimental treatments and still expect good treatment and respect. This right is taken away if a patient is assessed as incompetent. Patients should have a Power of Attorney for Personal Care so that someone you trust will consent or refuse treatment on your behalf when you cannot decide for yourself.

The right to consent or refuse treatment and to know that your consent or refusal will be followed even if you become incompetent.

The right to change consent forms to include specific treatments you will or will not consent to and to have a list of the specific caregivers who provide the treatment. Sometimes physicians allow medical students to perform the treatment without a patient's knowledge. Your physician may accept or reject your changes.

The right to receive adequate medical care under the circumstances. Although we all want to receive the best medical care available there is no working definition for "best medical care" so the courts rely on minimum standards of care to make their decisions.

The right to choose one's physician if that physician agrees. Patients do not have to accept a specific physician and a physician does not have to accept someone as a patient.

The right to not take part in research or teaching procedures (including refusing to be examined and treated by students in teaching facilities).

The right to delegate decision making for personal health care, and for financial and legal decisions.

Patients' Moral Rights

Moral rights have some foundation in law but may prove difficult to argue in a court of law. Moral rights are a reasonable expectation of the kind of care and treatment a patient should receive.

To be treated as a whole person rather than as a body with a disease.

To be fully informed about your condition, prognosis and treatment alternatives, unless you wish a family member or friend to represent you.

To be actively involved in making decisions at all times and having control over those decisions, unless you wish a family member or friend to make them for you.

To be respected so that your descriptions of pain and symptoms are treated seriously.

To be spared unnecessary tests, examinations, and treatments.

To be fully informed of all direct and indirect costs.

To be treated free of discrimination.

To have a second opinion on request.

To have one's family and friends treated with consideration and respect.

To have one's information kept confidential unless doing so will harm you.

It can be difficult to translate rights into appropriate actions. As I mentioned earlier, definitions of terms like reasonable standard of care, informed consent, and respectful care depend a great deal on whom defines the term. If a court of law defined these terms in each specific patientcaregiver relationship you would find as many different definitions as situations.

More specifically worded statements of rights are difficult to enforce as well. Although it is wise to know a hospital's admission, treatment and discharge policies it is impossible to list all the policies of any institution or to expect that they are always followed.

The demand for confidentiality or privacy of medical information is difficult to enforce. Although the medical records are considered confidential they can be examined by other caregivers involved in the patient's care, and perhaps medical students, insurance companies and administrators. Patients' medical records are owned by the physician or hospital, not the patients. Patients may request to see their records and can expect cooperation.

Patients' Responsibilities

Just as people have rights, they also have responsibilities. Without responsibilities, we cannot expect cooperation and honest communication with our caregivers. Some responsibilities are:

To honestly communicate your symptoms, past medical history and your own idea of what is wrong.

To take an active role in your own health. It is difficult to expect reasonable care if you leave all the decisions to the caregivers, because they cannot know what is going on inside you. It is not helpful to lessen the effects of treatment by abusing your body with cigarettes, drugs and alcohol.

To follow your caregiver's instructions carefully after you have both agreed to a treatment or procedure.

To treat your caregivers with the same respect and consideration you expect from them.

To understand and respect the time constraints and other professional stresses that may affect the patientcaregiver relationship.

To request only tests and treatments that the physician agrees may improve your physical and emotional comfort.

Caregivers' Rights and Responsibilities

Rarely are caregivers' legal rights mentioned. Physicians, for example, do not have to accept a person as a patient nor do they generally have to provide patients with a copy of their medical record. The record is legally held by the physician or hospital although you can get copies (usually for a fee).

Caregivers, physicians in particular, are given protection under the law for their medical judgment. If in their opinion a comatose patient requires lifesupport systems their opinion can overrule the family's wishes, unless the family has a legal Power of Attorney for Personal Care. However, in emergency situations when patients cannot speak for themselves and there is no time to read through forms, emergency physicians and nurses have a responsibility to treat patients with, or without, the consent of their family. The law still assumes that in emergency situations, physicians know what is best. Most physicians will, if there is time, consult with the family to talk about the options and to come to mutual decisions about care.

When someone has a terminal or life-threatening illness, there is usually time to notify physicians and other caregivers, in advance, of your concerns and wishes. Written confirmation of what you have told them will encourage acceptance of your wishes. As in all medical situations, patients must give consent to have any tests or treatments or to withdraw any treatments.

Caregivers are given a great responsibility by society and in return, their judgments are not considered legally negligent unless minimum standards of care are not followed. Extreme cases of negligence occur and should be prosecuted, however, a physician, nurse or therapist must sometimes make lifeanddeath decisions without the help of hindsight. Their legal rights help protect them from criminal and civil convictions.

There are codes of ethics for all professional caregivers including physicians, nurses, therapists, chaplains and psychologists to guide them in making decisions. These codes describe a professional's responsibilities to act in the best interest of the patient, to respect their professional and to acknowledge their limitations.

Families' Rights and Responsibilities

Generally speaking, the family cannot go against a patient's expressed wishes. In fact, a primary purpose of this book is to stress our need to respect a patient's wishes. The greatest difficulties for family members arise when they wish to make decisions on behalf of loved ones that cannot speak for themselves. Physicians should listen to a family's wishes but are not bound by them. The physician may ask the family for their opinion about lifesupport systems and other treatment but their opinions do not have to be followed. Even if the patient has shared his wishes with his family, physicians do not have to listen or act on these preferences if in their medical judgment there is a better way. Legal forms such as Powers of Attorney or Living Wills can help families speak on behalf of their loved ones.

Many of the above moral rights and responsibilities apply to family members or close friends.

Powers of Attorney and Living Wills/Advance Directives

Powers of Attorney and Living Wills give written directions about what a person may want in different situations. As legal tools they leave many unanswered questions. As communication tools, they encourage people to talk about what they want and still leave enough room for flexibility as situations change.

For example, a woman brought into the emergency department for respiratory arrest was about to receive help when her husband produced the woman's Living Will. The document clearly stated that the woman did not want life support treatment during an emergency. The doctors immediately stopped the treatment. The woman was conscious. An emergency nurse, at some risk to her career, asked the woman if she wanted help breathing. The woman's body language clearly indicated she did. With some hesitation she was helped to breathe with a ventilator. The woman was grateful that her written instructions were ignored because she had not thought of this particular situation. Were it not for the nurse, this woman would be dead. After the medical emergency was over, she was taken off the ventilator and went home without other treatments or problems.

A Power of Attorney document gives a designated family member or other trusted person the right to make legal decisions in situations where the patient cannot or does not want to decide for themselves.

There are generally two types of Power of Attorney forms: (1) dealing with personal care concerns including health care decisions, home care decisions, life and death decisions, and (2) dealing with financial, banking, insurance and other legal issues. The financial power of attorney takes effect immediately upon signing while the personal care power of attorney comes into effect when the person cannot make decisions any more (e.g., in a coma).

An ordinary power of attorney ends when the person making the document becomes mentally incompetent, therefore, it is suggested you also have an 'enduring or continuing power of attorney'. It is also often suggested that one person should not have authority over both these general categories as there may be a conflict of interest. For example, one might be less likely to demand certain medical interventions if they know it will deplete a person's financial savings. By splitting up the two categories, there are at least two people who can speak up for the person who is ill. This may not always be practical when the person has only a spouse, child or friend to act in both capacities. It is especially important in this circumstance to have honest and open communication about what the person does, and does not, want done in various situations.

A sample wording of a Personal Power of Attorney:

I, _______, revoke any and all previous power of attorney for personal care made by me and appoint _______ (one or more people) to be my attorney(s) for personal care in accordance with the laws of my government. These attorneys will act(you choose either separately, e.g., either can decide for you or jointly, e.g., they have to agree on all decisions). If any or all of my attorney(s) cannot or will not act on my behalf for whatever reasons, I appoint _______ name(s) to act in their place. My attorneys have the authority to make all personal care decisions on my behalf if I am mentally incapable of doing so myself including the consent or refusal for treatment decisions. The following are specific instructions, conditions and restrictions on their authority to make decisions for me(you don't have to be specific but may want to describe aspects of care that are very important to you, including which treatments you want to have done and which you do not.)

Different jurisdictions have different rules about the wording, who can act on your behalf and who cannot, and how the document needs to be signed. For example, the law may require that you have to sign and date the document yourself and have it witnessed by two others.

Being the Power of Attorney for someone (either for personal care or for property-legal-financial issues is not an easy job. It takes strong advocacy skills, an organized mind, time and patience. Find out what specific rights and responsibilities are involved in your jurisdiction when acting as someone's Power of Attorney. The government department responsible for this information can be found by calling the government or checking their web site.

Some of the typical responsibilities for a Power of Attorney for Personal Care include:

Putting the person who is ill first above financial and your own personal preferences.

Tell the person who is ill what decisions you are making and why in words that best help them understand what you are doing on their behalf. Get their involvement in the decision making process as much as possible.

Let other family members, care providers and other supporters know what is going on as soon and as clearly as possible. Consult with them on alternatives before making decisions.

Help maintain the person's independence as much as possible.

Always choose the least restrictive or intrusive alternative unless you were told in advance not to. For example, if the person who is dying specifically requested the use of a respirator in case they needed one in the future, then that choice must be honored as most reasonable in the circumstance, although others would consider it intrusive.

Do not approve of any tests, procedures, or treatments that will not add comfort and joy to the person's last days, weeks or months.

Do not allow physical or chemical restraints unless they are clearly needed to protect the person's safety or increase their comfort or enjoyment.

Get the advice of professionals and other people in the know when you need it. Don't assume all the responsibility. Help is there for the asking.

Keep records of what you have done and expenses you have incurred.

Some of the typical responsibilities for a Power of Attorney for legal, financial and non-personal care include:

Keep records of all transactions you make on behalf of the person as well as a list of their assets, pensions, investments, liabilities, expenses paid and debts to be collected.

Keep all the person's finances and assets separate from your own and never 'borrow' from their assets.

Put the person's comfort ahead of other financial situations. This includes not worrying about depleting their assets if this is needed for their care. Your concern in not what people inherit after the person dies but the person's comfort now.

Have the person participate in decision making as possible and keep them informed about what you are doing and why?

Maintain the value of the person's assets when this does not conflict with their personal care needs. This may mean you need to open or close bank accounts, pay bills, buy goods and services, transfer assets, re-direct pensions, deal with investments, collect debts, maintain or sell property, homes or personal belongings. If possible, maintain a person's home even if they are moved to a nursing home or other facility unless it will dramatically damage the person's wealth. Knowing their home still exists is very comforting to people at the end of life. Waiting a few months is usually not a liability to the person's assets.

Know who the executor of the estate is and prepare to help them after the person dies identify assets and other provisions of the will.

A Living Will or Advance Directive is another form that helps speak up for the person who is ill. This document is very different from a Last Will and Testament that tells people, after a death, what is to be done with someone's property and assets. A Living Will puts in writing what medical interventions someone does or does not want under certain situations and the will may designate someone to speak on behalf of the person, similar to a power of attorney.

Each province and state has different rules in place about Powers of Attorney and Living Wills. Rather than provide a sample from only one province, it is important for you to get the forms specific to where you live. Forms are available from bookstores, government, libraries, software packages, and through your lawyer.

Resuscitation and CPR

Do not resuscitate orders (DNR) are instructions that must be written in a patient's medical record by the physician saying that the patient should not be treated if they stop breathing. This order is meant to prevent heroic efforts that prolong someone's life who is actually dying a natural death. The order is usually written in the chart after discussion with the patient and/or family speaking on behalf of the patient. The order can be changed at any time the patient wants although it is not always as easy as it sounds, especially if the professionals disagree with the patient's decision.

Charles J. Wright, MB, MSc, FRCSC is the Director of Clinical Epidemiology and Evaluation at the Vancouver Hospital. He led the extensive research on the usefulness of resuscitation for patients at the end of life to minimize its misuse. His conclusions are startling. If a patient has a cardiac arrest (whether they are dying or not) when no one was present, the effectiveness of CPR is 0%. In other words, 100% of patients die. Yet, some hospitals still routinely try to start a patient's heart after they have had an unwitnessed heart attack. If the attack was witnessed and the proper equipment available, less than 8% of patients survived at all and none survived if CPR attempted for more than 20 minutes.

Patient's Caution: As with any policy in health care, the original intent of the policy is sometimes lost in the day-to-day work of professional caregivers. Sometimes it is assumed that disabled people, our elders or poor people do not want to be resuscitated. This false assumption may put about one-third of our population who are not valued in our society at greater risk for a premature death. To safeguard yourself, make sure that you understand DNR orders and when you do or do not want it used in your case. Legally designate someone to speak for you through a Power of Attorney so that you are protected as much as possible.

Withdrawing or Preventing Life Supports

Withdrawing or never beginning life-support systems or treatment (which is not euthanasia or assisted suicide) may be allowed when:

The patient refuses the treatment.

The patient is believed to be permanently comatose and the physicians and family agree that life support systems and treatments are no longer helping the patient to improve.

The patient is considered legally dead. It is also allowed under certain specific circumstances to not resuscitate a terminally ill patient who is near death and who has stopped breathing through a 'do not resuscitate' order (DNR). These orders are intended to prevent the horrible situations where families watch a loved one go through tortuous efforts to stay alive rather than die a natural death.

The problem is deciding when a person can no longer be helped by life-supports. One person with a life-threatening illness may want to die after months on a ventilator while another person wants even more life-support treatment. The value of one's life is extremely difficult to assess, on your own or with the help of others. Caution and taking one's time to decide can encourage thoughtfulness and questions about one's assumptions about what is right. Keep the person's cultural and religious beliefs in mind when making decisions on their behalf.

Talking about these decisions beforehand with the health care professionals most involved in the case can help avoid the trauma that may come when you second guess any decisions you make. "Did we treat too long or not long enough?" "Should we have tried other life-support treatments before giving up?" "What was the right thing to do?" The more you can minimize the second guessing by making decisions openly and honestly beforehand, the better.

Negotiated Death

Negotiated death is when the patient (when able), the family, physicians and perhaps nurses, hospital administrators, lawyers etc., discuss and record what treatment is best suited for situations when a person is near death. The documents I have suggested provide help with this. Once decisions are made, they are recorded and reviewed as the patient's condition changes. At any point the patient may unilaterally cancel any of these decisions although, in practical terms, it may be difficult to do if the professionals and/or family disagree.

Legal Definition of Death

Medical technology has progressed to the point where laws have been passed or are being examined to define when death occurs. The definition of death is very important in cases of terminal or life-threatening illness. Without a definition it is difficult to know when life-support systems can be legally removed. It is also crucial when considering donation of organs. The time of death is important for deciding when a legal will or insurance policy comes into effect, or in considering the facts during a criminal procedure.

There is no ultimate definition of death as different jurisdictions have different definitions. For some, death occurs when the heart and breathing stop. For others, it is when there is no brain activity. To date, the criteria used most often (but not always the legal definition) is one developed by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death, 1968.

This criteria for a definition of death is:

No responsiveness.

No movements or breathing.

No reflexes.

Flat electroencephalogram (EEG) except, for example, if the body temperature was lowered by freezing lake water or the person has poison in his body.

The debate on the definition continues but it is important for you to know that in cases of terminal or life-threatening illness, or when a life-support system is used, that the definition is blurred. If a person in an irreversible coma is breathing by artificial means, is he still alive? Is a person alive if she has no brain activity but her body is kept alive with intravenous feedings and medication?

These are not easy questions, nor is there any unanimous agreement on the answers. Knowing about these difficulties can help you to discuss them with the other people empowered to make decisions with you. These types of decisions rarely have to be made quickly. Do not rush into a decision. Take the time to feel comfortable with your choice.

If a person is able to live and die at home, most of these issues do not come up as there are no life-support machines nearby and death is more natural.

Legal Concerns After Death

People generally have no right to will their body away. They can direct that it be used for organ donation, education or research. If a person dies at home, the body needs to go directly to the hospital. Only some organ donations are possible if a person dies at home.

Survivors cannot be forced to consent to an autopsy unless the death falls within the power of medical examiners or coroners (e.g., if they suspect the death was not by natural causes).

Complaints and Lawsuits

The increase in medical malpractice lawsuits in North America has increased insurance rates dramatically. Unfortunately, a concern about legal problems can make open communication and cooperation difficult. As a result, patients and caregivers may become defensive and the patient-caregiver relationship breaks down, leading to a lawsuit. It is a vicious circle.

Other reasons for lawsuits include caregiver negligence or the malicious prosecution of caregivers by patients or family members. People sometimes need to blame someone else for the illness or pain and suffering, and physicians and other caregivers are often the people singled out for such lawsuits. At other times patients or families want a caregiver or institution to apologize for a serious error and when an apology isn't made they file a lawsuit to demand an apology.

There is rarely a need for lawsuits if patients, families and caregivers work together. Hospice care in Canada has no examples of lawsuits.

In situations where problems occur, a lawsuit does little to help someone who is terminally ill because it usually takes years for it to reach the courts. Lawsuits may improve the treatment of future patients but they rarely benefit the people for whom the lawsuit was filed.

Concern must remain with the person who is dying. If caregivers are not cooperative and communicative, then speak to their superior or hospital administrator. The option of changing doctors is often available to you. Bringing in a go-between like a doctor, social worker, nurse or other caregiver is an option. If you wish to complain constructively, speak to the person with whom you have the difficulty, to see if the problem is simply a communication problem. If that isn't effective:

Put your complaint in writing and send it to the person you have the difficulty with and his immediate supervisor. Request their reply by a certain date including what you want to have happen as a result of your complaint.

List all the facts of your complaint including dates, peoples' names and important conversations.

Keep a copy of all letters and a diary of all communication including persontoperson conversations, telephone calls, etc.

Be assertive without being aggressive. Mutual respect goes farther in helping someone with a terminal illness than confrontation between patients, family and caregivers.

If you do not get satisfactory results, you may make a formal complaint to the physician's licensing and regulatory body. In Canada, you could contact the provincial College of Physicians and Surgeons. In the U.S., you could contact the state medical board (usually located in each state capital).

Medical and Hospital Insurance

The cost of medical and hospital/hospice care is often very high. Certain government programs in Canada and the United States offer help, but many direct and indirect medical costs (loss of salary, transportation, medications, personal medical equipment and home care) are not always covered. To understand what medical insurance (e.g., government and/or employment plans) you are entitled to and what insurance you must pay for requires patience. Whenever you get information on insurance by phone, write down the date, the person you spoke to, your questions and the answers you receive. You may be passed from one person to another before getting the answers you require, but be persistent.

In various jurisdictions you have a legal right to medical insurance. In Canada there are provincial government medical plans, usually with set premiums, that cover basic medical and hospital care. Extra insurance for things like private hospital rooms, special nursing care and medication is available, often through employment benefit packages.

Note: Some private life insurance policies allow you to cash in part of the benefit before you die to cover some of the costs of caring for you in your last months. Check with your insurance company to see if this is true in your case. If not, ask why not and request an appeal to allow you to get some of the money, if you need it. There are also new insurance policies that cover long-term care of patients at home. Check with your agent.

The purpose of understanding legal and moral rights and responsibilities is simply to encourage cooperation between the patient, family and caregivers. In many situations, mutual respect and understanding prevents the need to argue the letter of the law. Knowing the ground rules of the patient-family-caregiver relationship, however, allows people to understand what their roles are, how their roles can be improved and how, together, they can provide the total care needed by someone who has a terminal illness.

Chapter 16: Preparing Legal and Financial Affairs

[Chapter 2 has checklists to use with the following information.]

Preparing a Legal Will

Organ Donation

Estate and Financial Planning

Personal Information Record

Documents and Property Checklist

Personal Financial Status

Preparing a Legal Will

Each jurisdiction in Canada and the United States has rules about what to do with a person's estate after death and what types of wills are acceptable.

The purpose of the will is very simple. It states what you want done with your assets, who gets what and how much. It may also include funeral instructions, your request that a family member or friend be the guardian of your children, and sometimes a last word to specific family members and friends. These funeral instructions should also be filed as notes elsewhere, as the will is not always available to the family before funeral preparations are made.

Some jurisdictions limit the power of your will. For example, a jurisdiction may have regulations requiring division of the estate to include former spouses and dependent children by a former marriage. Your request to leave your children under the care of another family member or friend may not be followed in some jurisdictions where it is up to the court to determine who can best care for the children.

It is important to realize that each jurisdiction has its own regulations about wills and estates, therefore, you should get professional advice to make sure your wishes are followed as much as possible and that estate taxes are kept to a minimum.

Every adult member of a family should have a will and have it renewed at least every five years. A new will is often legally required after a marriage, divorce or death of a beneficiary.

Organ Donation

Most jurisdictions have their own Anatomical Gift Act. Check with your home care case manager to see what your local laws are to make sure your wishes can be carried out properly.

Some general information about organ/body donations:

Some medical schools need bodies for study; these schools generally do not pay transportation costs.

The body can be present for funeral or memorial services whether or not an organ is donated.

The ideal people for organ and body donation are less than 60 years old. Weight is not a factor but generally cancer patients (except in some cases of brain cancer) are not acceptable for organ donations.

The common organ donations are skin, heart, liver, kidney, lung, cornea, pancreas, certain bones, and middle ear.

The time factor is crucial in most organ transplants, therefore, hospital deaths are most suitable for transplants except for cornea and skin.

Some organs (eye, skin and some bones) may be 'banked' for up to 48 hours.

Organ or body donations do not have to be accepted by a medical team so make other plans, if necessary.

There are many organizations in North America that coordinate organ donation. Donor cards may be part of a driver's license, or you can become of a member of an international organization such as the Living Bank.

Although a person's consent to donate organs is binding on the family, in reality, most hospitals will not accept an organ donation if family members are opposed. If a person has not authorized organ donation upon their death, family members (in the following order) can consent on their behalf:

The spouse (if there is one).

If no spouse, an adult child.

If no adult child, a parent.

If no parent, an adult sibling.

If no adult sibling, any adult next-of-kin.

Estate and Financial Planning

Estate and financial planning can help an executor/executrix and family administer the estate. There are many tax and legal considerations. In some cases it may be wise to transfer bank accounts and other assets before your death to save on possible inheritance taxes and probate costs.

Check with the local government or a lawyer about legal and tax considerations for the estate. If the estate is complex, or if there are real estate and other major investments, it is wise to get the advice of an accountant and/or lawyer.

Note: Check with your federal, state/provincial pension and benefits departments, the Veterans' Department, life insurance companies (including ones attached to your credit cards, automobile association), pension funds (including foreign ones) professional associations, unions and groups that may provide: death benefits, surviving spousal benefits, orphan's benefits, and child benefits, long-term care or disability benefits and whether an accidental death provides a higher benefit. Some benefits may not have been applied for in advance but may still be given to cover expenses incurred during the illness (long-term care disability benefits).

Where possible, change certain documents into joint custody so that bank accounts, home mortgage and other assets do not become part of the estate. This permits a spouse, for example, access to money quickly and reduces the value of the estate for tax purposes. It is also best to have a single person named as the life insurance and RRSP beneficiary rather than the estate. In this way, the money is paid out right away rather than waiting for the estate to be legally processed.

Make sure there is a current legal will to settle the estate. This is often a tricky question that family members do not want to bring up with someone who is dying. However, the legal nightmare and bureaucratic frustrations involved in settling a disorganized estate is not a last testament with which the person would want to burden their family.

The Financial Status form in this chapter records the financial affairs. The forms record the extent of the estate. Many people who say they have nothing may be amazed at how much net worth they have.

I suggest you (1) enlarge the forms using a photocopier, and (2) use a black pen to fill in the sections of the forms that will not change (e.g., names, past events). For information that will change (e.g., financial data, addresses), use a dark pencil. Read all of the sections within a form first before writing in any information. This familiarizes you with the forms and prevents you from repeating information within the same form.

The patient should be encouraged to sign a Power of Attorney for Financial and Legal Matters to give a family member, friend, lawyer or accountant the power to handle the financial affairs in case the patient is unable to do so for themselves. This permits someone to do the banking, pay the bills, look after investments and minimize any taxes or probate costs.

A Power of Attorney, easily drawn up in most jurisdictions, simply states that the patient gives a named person the right to handle the financial affairs and that the Power of Attorney can be revoked at any time. It should be witnessed and, in certain circumstances, notarized to make sure the patient is signing away these rights voluntarily. (See Chapter 15 on Legal and Moral Rights and Responsibilities.)

Personal Information Record

The following records are part of the book Managing Your Fiancial, Legal and Medical Records, also available from Legacies Inc.

Use the following headings to create your own record.

Full legal name





Legal residence address

Mailing address if different

Year you moved into your residence

Other residences (e.g., summer home)

Work address

SIN (Canadian) or Social Security Number (USA)

Date of birth

Place of birth


Marital status (circle answer): single, married, widowed, divorced

If married or widowed give person's full name, including any previous surname (if more than one, use a separate page)

Date and place of marriage

If widowed give date and place of death

If previously married give name of former spouse(s) and date(s) marriage ended

Father's full legal name

Birth date and birthplace

Address and phone number if still living, or

Date and place of death

Cause of death

Mother's full legal (maiden) name

Birth date and birthplace

Address and phone number if still living, or

Date and place of death

Cause of death


Employer name and address

Religious affiliation (including name of your cleric and place of worship)

Important dates and locations of significant religious ceremonies (e.g., baptism, confirmation, bar mitzvah)


Date and place of enlistment

Date and place of discharge

Service number

Organization or outfit

Rank or rating

Commendations received

Location of discharge papers

Flag for casket drape

Professional/union memberships?

Make a separate list of the name, address, telephone and relationship of important relatives and friends (or give location of where these addresses can be found).

Executor/Executrix (name)





Family physician (name)



Lawyer (name)



Accountant (name)



Documents and Property


Documents Details Location

Passport #

Medical insurance #

Driver's license #

Birth certificate #

Marriage certificate(s) #

Separation/divorce papers

Children's Birth Certificate(s)

Last Will and Testament

Living Will/Advance Directive

Powers of Attorney (Personal Care, Financial)

Military discharge papers

Income tax records

Mortgages and Notes

Deeds and Titles

Address book

Other documents

Credit Cards

Credit Card Name No. Expiry Date


Safety Deposit Box(es)


Box number

Key number

Location of key

Principal Financial Institution (e.g., bank)



Type of account(s)

Account number(s)

Secondary Financial Institution (e.g., trust company)



Type of account(s)

Account number(s)

Location of bank books, records

Insurance policies (if more than one, use a separate page)

Name of company



Type of insurance(s)

Insurance Policy number(s)

Name of insured


Agent's name



Location of policy(ies)

Real Estate (if more than one property, use separate page)


Assessed value $

Mortgage(s) $

Mortgaged with

Mortgage number

Name on Deed Title

Property insured with



Agent's name



Policy number and amount

Home contents insured with

Agent's name



Policy number and amount

Employee Benefits

Government Bonds

Value $


Corporation Bonds:

Value $


Guaranteed Investments

Value $

Stocks, Shares and Other Securities


Type and number of shares

Family Heirlooms List

Item Details Location


Wedding Ring(s)





Cassette tapes/CD ROMS

Home movies/videos

Career papers/awards

Family tree



Personal Financial Status

(To be completed before death if possible, and reviewed by the executor/executrix after death. For each major section below e.g., retirement savings or bank loans, make a separate list. For complicated estates, I suggest you get the advice of an estate accountant and ask her to prepare your financial records and provide you with extra photocopies.)

Estimated Assets


Insurance policies

Retirement savings

Business interests

Total securities

Money owed by others

Real estate




Household effects


Boat, snowmobile & others

Collections (coins, art, etc.)

Other assets (list)

Total Estimated Assets

As of this date

Estimated Liabilities


Real estate contracts

Bank loans

Personal loans

Credit card, charge accounts

Personal bills (telephone, gas, hydro, TV)

Pending lawsuits

Unsettled claims

Outstanding taxes

Back alimony and child support

Other debts (list)

Total Liabilities

As of this date

Note to Patient: If you have liabilities that your family doesn't know about (e.g., gambling or personal business debts,) keep a record with your lawyer, executor or friend. Otherwise your next-of-kin might be surprised by unexpected demands on the estate and this could be emotionally and financially hurtful to them after your death.

Chapter 17: Preparing Funeral Arrangements

Definitions of Funeral Terms

Questions About Conventional Funerals

Disposition of the Body

Questions About Cemeteries

Questions About Cremation

Arrangements for Monuments and Markers

Funeral and Cemetery Service Instructions

Pre-planning a funeral and the disposition of the body (e.g., burial, cremation or donation) can save a lot of emotional strain for survivors. After a death the survivors have limited physical and emotional energy so advanced planning saves money and also helps the family. If possible shop around for the kind of service you want at the most reasonable costs. It is a serious mistake to leave the arrangements for such major investments till the last minute. If the funeral and disposition of the body are not pre-planned, use the forms at the end of this chapter to help you make some of the decisions.

That said, funeral preparation can be a useful diversion for family members looking for something concrete to do after a death. Discuss with your family how much of the funeral should be pre-planned and how much should be left for the family to do after the death.

The first rule of planning a funeral service is not to feel rushed. If a person has died at a hospital there is no need to rush him or her to a funeral home. The hospital has facilities to keep the body for a time to let family members or friends make the proper arrangements. If the person died at home, you can keep him there until you are ready for him to go to the funeral home of your choice.

There are basically two types of general funeral services available to the public:

Traditional funeral services.

Services arranged through a Memorial Society or 'simple alternative', usually at reduced costs.

Neither service is better than the other. Just as some people prefer large weddings over smaller, less expensive weddings, there are others who prefer more elaborate funerals over less expensive ones. Always get a list of all the costs and taxes before agreeing to any type of funeral service.

Let us begin with some definitions of terms used by funeral professionals to help you understand the choices available to you.

Definitions of Funeral Terms

Conventional Funerals

Funerals organized through a licensed funeral home probably cost thousands of dollars. The more elaborate the funeral the higher the cost. This figure does not include costs for cemeteries, flowers and headstones/monuments.

For-Profit and Not-for-Profit Alternative Funerals

These funerals providers have similar services but at different costs.

Memorial Society Funerals

Memorial Societies are non-profit, non-sectarian consumer organizations that deal directly with select funeral homes to promote simple and dignified funerals at reduced costs. For a nominal fee (e.g., $10.00-20.00) members of these societies receive the latest information on low-cost yet dignified funerals. These societies also act as consumer watchdogs on legislation regarding funerals. They do not arrange funerals themselves.

Non-Professional Funeral

A funeral arranged privately without the help of a funeral home. The family or friends prepare and transport the body, provide the casket and obtain the legal documents. This option requires the family or friends to understand the local laws to make sure no violations are made. The family physician or a cemetery official may be able to provide the information about legal requirements. This process involves a lot of effort for people not used to these procedures but it is possible.

Funeral Director

Also called a Mortician (avoid the title Undertaker as it is disliked by most funeral directors). Most funeral directors must be licensed. They make all of the funeral arrangements including pre-paid services, the funeral itself, getting legal documents and handling the family's questions.


Usually implies that the body is present for post-death services. A funeral usually includes a religious ceremony in a church/synagogue/temple, at one's home or in the funeral home chapel. A 'wake' or 'visitation' may precede the funeral where people can pay their respects to the deceased and immediate family. The casket may be open or closed.

Memorial Service

Usually implies that the body is not present for any post-death services. This service may be held in a church, funeral home chapel, at someone's home or another location (not to be confused with a Memorial Society Funeral).

Body Donation

Although people may donate their body to a medical school, the school does not have to accept the donation. It is important to make these arrangements before death and have other plans made.

Funeral Costs

Memorial Societies have set fees in agreement with specific funeral homes. The various 'plans' encourage low-cost caskets, few extra services such as visitations, no embalming etc. Conventional funerals vary greatly in price as each funeral is based on service-used fees. Some of the services that are available (but not always necessary) include: removal of the body from the place of death; the care and preparation of the body (embalming is optional in most cases); coordination between family and clergy for religious service; preparation and filing of legal documents; writing the obituary; use of the facilities and equipment; use of the chapel; visitations; the casket; transportation to the cemetery or crematorium.

Other Costs

The burial or cremation charges; fee to clerics; use of the place of worship; organist; flowers; reception after the funeral and catering costs; and transportation of the body from another town/city. In cases of body donation to a medical school, the cost of transportation and other costs may be involved.


Disinfecting the body by replacing body fluids with chemicals. Prevents quick deterioration of the body and the odors that occur. Generally not required except in certain circumstances, e.g., if the body is to be transported between states/provinces. Embalming does not preserve the body indefinitely.


Saves the survivors many decisions but should provide flexibility for them to change parts of the plan to meet unexpected circumstances. Memorial Societies encourage pre-arranging your funerals and disposition of bodies. They keep a record of your wishes on file and transfer the file to any area in the country you move to. This arrangement is also possible with some funeral homes.


For funerals, burials and cremations, pre-financing can permit you to pay today's prices for tomorrow's services. Be sure that your funds are put in trust and cannot be used for any purpose other than the services you have paid for. Ask if you can withdraw your money (ask if there is an administrative fee charged), or transfer them to another funeral home or cemetery, at a later date. Ask for a detailed list of services and costs before agreeing to purchase anything. Try to include other members of the family in the decisions.

Questions About Conventional Funerals

Is the funeral home and funeral director licensed? A licensed business ensures some minimal standards of practice as well as being part of a system that has a complaint procedure if you are unhappy with the service you received.

Will the funeral home provide a written report of the decisions you made including all direct and indirect costs?

If you are pre-arranging and pre-financing your own funeral will the funeral home keep your funds in trust? Can you withdraw or transfer your funds and if so at what cost?

If the funeral has been pre-financed will the funds cover all direct and indirect costs at the time of death?

What complaint system is in force in cases of disagreement on services and costs?

If you have selected a Memorial Society-style funeral, will the funeral home accept it and at Memorial Society costs?

Disposition of the Body

Just as funerals can be quite expensive, the disposition of the body can also be expensive. Again, pre-planning can save the survivors' physical and emotional energy. However, if you know what you want and how to get it, disposition of the body does not have to be difficult.

Earth Burial/Internment

Burial can be in a municipal, church, veteran or other nonprofit cemetery, or in a privately owned fraternal or corporate cemetery. Provincial/State jurisdictions may regulate cemeteries including whether they must have an endowment or perpetual care fund to make sure the cemetery grounds and individual graves are properly maintained. A point to remember is that some cemeteries are nonprofit and others are owned for profit. Prices do not vary greatly but the services and care offered may be different.


Is a process of combustion and evaporation that reduces human remains to charred fragments. These cremated remains may be stored in a container (urn) and kept anywhere you wish or buried in a cemetery plot or placed in a columbarium. Cremated remains are sometimes scattered but local laws should be checked to insure the legality of scattering. Note: some religions do not permit some of these practices. Check with your cleric or funeral director.


The casket is placed into a mausoleum crypt (above-ground structure) and sealed by a marble or granite face. Mausoleums are usually on cemetery grounds.

Vault or Lawn Crypt

A concrete box in the ground where a casket is placed and then sealed with a lid. This prevents the ground from caving in around the casket. Elaborate vaults are available.


A structure where urns of cremated remains are placed into one of many spaces or niches. This structure may be part of a mausoleum.


Some cemeteries have limits about the size, shape, and material of the marker (granite versus concrete) or whether the marker must be flush with the ground or stand up. They may also have limitations on the inscription allowed. Prepare what you would like on the stone/monument to determine if it is acceptable to the cemetery. You may also decide that you would prefer a different kind of monument such as a tree planted somewhere in your honor, a park bench in a city park or similar memorial.

Traditional Cemetery versus Memorial Park/Garden

Traditional cemeteries permit upright monuments, usually made of stone. Memorial Parks/Gardens have bronze or granite memorials level with the ground to blend in with the landscape of lawns, trees, flowers and gardens. Either can be publicly or privately owned, for profit or non-profit.


Does not involve a cost reduction (considered unfair business practice) but does permit shopping around, making a choice you prefer regarding location, services and costs, avoiding estate problems and giving peace of mind. Many cemeteries allow you to withdraw your pre-paid funds with little or no charge. Cemeteries may also belong to the National Exchange Trust that can credit your account to another cemetery.

Relationship with Funeral Homes

In some jurisdictions funeral homes own their own cemetery that may mean a cost reduction. When the cemetery is not affiliated with a funeral home, it is best to go to the cemetery yourself to make your own choices because in most cases, the cemetery staff will have more information available than the funeral home staff.

Coroner Cases

Each jurisdiction has its own rules about when a death at home requires a coroner to investigate before the body is moved by a funeral home or family. The coroner is legally responsible to determine the cause of death. If the death is an unexpected one, the coroner is usually called before the body is moved. If the death is expected, the family doctor and funeral home will explain to you the procedure the family must follow after their loved one has died at home.

It is usually the family doctor, funeral home or local police who will advise you if the coroner must be called.

Typically, the coroner is called in if:

The person's identity is unknown or unclear

Violence was involved in the death

Unexpected death of a child or elder

When the body is transported from or to another jurisdiction

When the death was accidental.

Questions about Cemeteries

Is this cemetery or memorial park/garden licensed? As with funeral homes, licensed cemeteries have some minimal standards of practice as well as being part of a system that includes a complaint procedure if you are unhappy with the service you received.

With which authority?

Who owns this cemetery or memorial park/garden and how long has it been in existence?

According to local laws how many days do I have to cancel this agreement without penalty? (Check with your local government agency, Better Business Bureau or consumer organization to make sure you are getting what you pay for.)

What are the sizes of the plots available?

Do you have any restrictions about the type of monument or marker I wish to use?

Can I buy one separately or must I buy one from the cemetery?

Does the marker or monument have to be made out of granite or bronze? (Granite and bronze last longest.)

Are there any restrictions on religious or cultural observances, like using lighted candles at the grave or having a survivor sit with a chair on the plot?

Can you supply me with a list of the various options and services available plus their costs, e.g., burial, a crypt in a mausoleum, a niche, opening and closing the grave/crypt, and installing a memorial?

Can I pre-pay through time-payments?

Do you have a perpetual care fund so that I do not have to pay maintenance costs each year?

Can I cancel any pre-arranged plans and get back any pre-paid funds?

Are there any administrative penalties for this service?

Can I transfer my pre-arranged plan and pre-paid funds to another cemetery or memorial park/garden?

Are you a member of the National Exchange Trust or similar organization?

Is this cemetery or memorial park/garden a member of any local, regional or national associations? If so, which ones?

What Code of Ethics or Creed of Ideals do you abide by?

Can you handle some of our preferences that are different from other people (e.g., planting a small garden on the plot)?

Questions About Cremation

Cremation may be arranged through a funeral home or cemetery or separate company depending on local regulations.

How long after death can cremation occur? (a time limit is set to prevent cremation in cases when the cause of death is uncertain.)

Must we have a casket for cremation?

What are the local regulations about scattering cremated remains?

Can you provide me with a list of options and services you offer plus a complete list of direct and indirect costs?

Arrangements for Monuments and Markers

It is important to consider what type of monument you wish to purchase before you buy a cemetery plot. Cemeteries may restrict the kind of monuments placed on plots in different areas on the grounds so it is important to know what you want before committing to a specific plot.

You may buy a monument or marker through a special dealership or perhaps the cemetery itself. Make sure you are dealing with a reputable group and that all direct and indirect costs are made clear. Also make sure that any monument or marker you buy meets the regulations of the cemetery or memorial park/garden.

Funeral and Cemetery Service Instructions

To the patient: If you want to be involved in the planning of your own funeral, it is important to leave instructions for your family and/or executor. Use the following form to help make your ideas plain. It can be very helpful to one's family to pre-arrange a funeral. However, making all the decisions in advance leaves little room for your family to be actively involved in honoring you. Having family make some of the decisions about funeral arrangements after your death can also help them through their grieving process. Time may go very slowly for family members right after a death. Having to make some of the arrangements gives them something concrete and valuable to do.

Have you pre-arranged your funeral?

If yes, is it with a funeral director or memorial society?




Contact person

Location of contract

Have you purchased a cemetery plot?

If yes, where




Plot number and site

Location of contract

Are you a member of a Memorial Society?

If yes, name



Contact person

If you have not pre-arranged your funeral and the disposition of your body, answer the following questions. If you have made arrangements, read the following questions and fill in any of your wishes that are not recorded elsewhere.

Do you wish your body to be embalmed?

Do you wish to be buried or cremated?

What inscription would you like?

Whether you are buried or not, would you like a separate 'monument' in your honor/memory such as a tree planted, or a city park bench, or a named endowment fund for your favorite charity?

Do you have a preference for a particular funeral home?

If yes, name



Contact person

Do you wish to be 'laid out' at home or somewhere other than a funeral home? In a coffin or otherwise?

Clothes you wish used

Jewelry you wish used, if any

Religious items to be included in coffin (e.g., prayer book and religious jewelry)

What type of casket would you like (wood, fiberglass, metal)?

Do you have a color preference for the inside and outside of the casket?

Do you wish an open or closed casket?

If you are a veteran and entitled to a flag draped casket, do you want the appropriate authorities notified?

Do you wish visitation rights for your family and friends? If yes, how often?

Would you like your cleric (e.g., minister, priest, imam, and rabbi) to officiate at a funeral service?

If yes, name



Contact person

Do you want a funeral service in your own place of worship or do you prefer to use the funeral chapel?

Do you have any preferences for pallbearers?

If yes,

Name Name

Name Name

Name Name

Do you wish someone (or several people) to eulogize you beyond whom your family may choose? Any specific anecdotes, history or thoughts you would like them to include?

Do you wish a book of condolences at the service? Would you like just signatures or a few thoughts from each person as a comfort to your family?

Do you wish an organist?

If yes, do you have a favorite piece(s) you wish played?

Do you wish a soloist or choir?

If yes, do you have a favorite song(s) you wish sung?

Do you have any favorite passages you wish read during the service?

Do you wish flowers or do you prefer donations to your favorite charity?

If a charity, which one(s)

Would you like a reception held after the funeral? Should everyone be invited or only the immediate family and friends? Do you want to have the reception catered beyond some light snacks and refreshments?

Donating the Body

Are you donating your whole body right after death?

Are you donating any part of your body upon death?

If yes, which parts

Have you filled out an organ donor card?

If yes, where is the card located, and who should be notified?

Card location

Contact person's name



Do you wish to be buried or cremated?

For Burials

Do you have a cemetery preference?

If yes, name



What type of grave monument or marker do you wish?

Do have a preferred inscription?

If yes, what it is?

For Cremations

Do you have a crematorium preference?

If yes, name



Do you wish the ashes deposited in a mausoleum or buried?

Do you wish the ashes given to a specific person?

If yes, name



Do you wish the ashes scattered?

If yes, by whom

Where (Make sure that your wish to scatter the ashes does not go against any local laws.)


Do you wish a newspaper obituary notice?

If yes, name of newspaper(s)

What do you want mentioned in your obituary?

Do you wish your entire family, including grandchildren listed? Do you want a photo included and, if yes, which one? Do you want to include any special friends, special events, associations, career information, military service details or other specific information?

Foreign Notifications

If you are a citizen or past citizen of another country do you wish that country's embassy to be notified of your death?

If yes, name of Country Embassy



List of People to Notify

Make a list, on a separate page, of everyone you would like notified of your death, including those who cannot make it to the funeral. Include: grandparents, parents, siblings, children, aunts, uncles, cousins, nieces, nephews, close friends, business/work associates, neighbors, work colleagues, volunteer work colleagues, professional associations, union representatives, etc. Divide this list among 1-5 people to ensure that every person on the list is contacted by only one person. Write down where you usually keep your various address books to help your loved ones contact the people you have listed here.

Executor's Checklist

[This checklist presumes that the person who died left a will and appointed an executor. If this is not the case, then the family, friends or responsible party must follow the provincial/state legislation regulating the disbursement of the person's assets.]

This is a short, preliminary list to help an executor get started:

Find and follow the will's instructions specifically.

Check with an estate lawyer or government department to see what your specific roles and responsibilities are in your jurisdiction.

Get at least a half dozen (if not more) copies of the Death Certificate from the Funeral Director. You will need these to work with the banks, pension funds, income tax forms, etc.

Follow the laws of your jurisdiction regarding disposition of the estate.

Determine if the will needs to be probated or not (small, simple estates usually do not).

Keep and organize all bills/invoices, receipts, purchase orders, telephone message logs, etc. These will help you pay off what is owing; collect what is owing to the estate and help determine if any of costs of caring for the person in the last months and the funeral costs are covered by a specific government or insurance benefit.

Pay all current bills out of the estate.

Pay all funeral costs.

Cancel all licenses (e.g., driver's, motorcycle, boating, pilot), certificates, social insurance numbers, credit cards, health insurances and other insurance policy payments, passports, visas, and similar legal documents.

Cancel all regular bills and automatic withdrawals from the person's bank account assuming that no one is taking over these costs ­ for example when a spouse or family member takes over the costs of the home, the bills should be transferred into their name (e.g., hydro, telephone, water).

Cancel all government benefits, pension benefits, etc.

Check with those same government, company, association, veterans, insurance benefits (including those attached to the credit cards, auto clubs) to see if any benefits including pensions, death benefits, spousal benefits, orphan's benefits, child benefits and/or disability benefits or long-term care benefits apply. Some benefits may not have been applied for in advance but may still be given to cover expenses incurred during the illness.

If the person rented their home, cancel the apartment lease as soon as possible.

If the person owned their home, dispose of it according to their will including all contents.

Deal with investments, cash in the bank and other assets according to the will instructions.

Either fill in the person's last tax return or have it done by a professional.

Disburse all remaining assets to the beneficiaries.

Other Specific Instructions

Write out any other special instructions or information not covered by this checklist.

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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