A Dying Person’s Guide To Dying
by Roger C. Bone, M.D.
By thinking ahead about what could happen - and about how
you will deal with problems if they do happen, you can create a better life and
a better quality of life for yourself and for the people who love and care
about you.
What I have to say is for the person who, like myself, is dying. We,
too, need to plan - to think ahead in order to fashion, out of the time
remaining, the best of what is possible.
As I am dying from cancer, I have learned some things that I
think are important for a dying person to know in order to plan. I am a
physician, but what I have learned has little to do with my medical training. I
have learned this as a person; perhaps my medical experience was helpful
because I have paid close attention to the actions and reactions of people
around me.
First, it is likely that you will be surrounded by persons
who mean well but, in the end, you must die your own death. Dying can be
considered a journey one takes alone with a crowd. Family and friends are the
first to gather around you, and they offer the most comfort.
Here are some pieces of advice to remember in those first
few days after you learn the bad news.
One or two people - probably family members - will make
enormous personal sacrifices to help you. If you are married, your spouse is
likely to do this, but don’t be surprised if others - a daughter, a
brother-in-law, or even a friend, step forward to offer extraordinary help. Be
grateful, and accept help, from whatever source, graciously.
Some family members, but especially friends, will treat you
differently. Even before you show signs of serious illness, people will have a
different look in their eyes as they talk with you. You might consider this
patronizing or over bearing. It may be difficult, but it is best to ignore
their attitudes and treat them as you always have. They will come around to
their normal selves when they get over the shock.
Happily accept all gifts from family and friends. It makes
them feel better and you might receive something you really like and
appreciate.
Don’t be afraid to ask to be alone. We need time to be by
ourselves. Some family and friends may feel driven to fill your every waking
moment with activities; perhaps they are trying to “take your mind off” your
impending death, but they may also be doing the same thing for themselves.
Be your own counsel. No one, including your physician,
religious counselor, spouse, or friends can understand 100% what you want and
need. It surprised me that some people seemed to “bully” me with advice when
they learned that I was terminally ill. We should remember Immanuel Kant’s
advice to avoid accepting someone else’s authority in place of our own powers
of reason. We are the ones who should be considering alternatives and making
choices. We can, and should, ask for advice. Make telephone calls and read
books - but ultimately, we should decide.
Slow down and ask your family and friends to slow down.
There may not be a lot of time, but there is sufficient time in all but the
most extreme cases to think, plan, prepare.
There are things you need to know from your doctors and
other health care staff. You need not ask all of the following questions or ask
them in this order. Still, these questions deal with crucial issues that need
to be addressed and, hopefully, resolved.
What is my disease?
You should find out as much as possible about your disease.
What is it? How will it affect me? And very importantly, how will it cause my
death? First, ask your physician. Additionally, many popular books are
available in bookstores and libraries which can give you a basic sense of your
disease process and disease terminology. National organizations, such as the
American Cancer Society, and often local hospitals can provide brochures, video
tapes, or even lay experts to help you and your family understand your
particular disease. Ignorance is not bliss; the more you and your family know,
the better able everyone will be able to cope with what is happening.
Should I seek a second opinion
about my disease and my
condition?
Seek a second opinion! A second opinion will relieve your
mind and resolve doubts one way or another that a major mistake has not been
made. More importantly, a second opinion will offer a slightly different
perspective that may help everyone’s understanding. Don’t be embarrassed about
asking for a second opinion or think that you will make your physician angry.
Second opinions are perfectly acceptable, and many physicians are happy when
their patients seek second opinions. The original diagnosis is usually
confirmed, and you are then more prepared to follow prescribed treatments.
What health professional do I especially trust?
Search for and then trust in a single individual. This does
not mean you should not listen to all health professionals and follow
reasonable directions and advice. But focus on one individual as the final
helper. This normally will be the specialist physician in charge of your case.
However, you may know your family doctor better than you know your cancer
specialist. If this is the case, your family doctor may be the one to choose.
But, if you do, make certain that your family doctor knows that he or she is
serving that role.
Why am I going into the hospital?
There are four basic reasons why a terminally ill person
would be hospitalized, but not all four necessarily apply to every patient.
They are: (1) to confirm the diagnosis and analyze how far the disease has
progressed; (2) to provide treatment that can only be given in the hospital,
(3) to treat a severe worsening of the disease; and (4) to treat the final phases
of the disease, if this cannot be done at home or with hospice. You should know
which applies to you so that you can understand why things are done to you and
what benefits you can expect.
What are the hospital rules about terminally ill patients?
Hospitals and medical centers have written rules and
procedures that outline in detail how the hospital will deal with terminally
ill patients. These are not “treatment” rules. These protocols or guidelines,
as they are called, deal with how to handle end-of-life issues, such as whether
the patient (or the patient’s family speaking for the patient) wishes
extraordinary “heroic” measures to be used to keep the patient alive. Hospitals
are obligated, and very willing, to share these protocols or guidelines with patients
and families.
Consider getting a durable power of attorney in which you name
one or two people to make decisions or choices on your behalf if you should be
incompetent or incapable of making decisions yourself.
Read the “Do Not
Resuscitate” policies of the hospital. Death should be peaceful, and you should
not ask for anything that gives you prolonged agony.
You should be aware that nurses and other hospital staff may
not know that you are terminally ill. This fact may not be written in your
chart, which can lead to conflicts between families and hospital staff. The
family may assume that everyone in the hospital shares their grief, and will
not understand the workaday attitude of nurses, dietitians, or others. It is
okay for the family to tell the hospital staff that you are dying since they
may not know.
What resources are available from the health care community?
Most hospitals have many services available to patients and
families to help with nonmedical aspects of your care. These include social
services and psychological, financial, and religious counseling. For example, a
visit, before hospitalization, to the hospital financial counselor by a family
member to check on insurance and payment plans is a wise move. In the rush to
admit a patient, important information may not get recorded. A 15 minute
meeting with counselors can avoid stress and anger over incorrect bills.
Similarly, meeting with the hospital social worker may be very helpful in
arranging home care. Use these services!
What can I do if it seems that nothing is being done or if I
don’t understand why certain things are done to me?
![](https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9o9d_9OeZvZb1R1NQ_9YgNJxVroNwCcZ5j-nhQb46JSWT5igiYgKe8YgLkUloWG3wQmEFzJ7UTWusBp4TUARXoXIRbiunSTp1I5ErZfcw3w_SRXNh1w4Tet7ssop2NwVV0VOQOGwXaC26/s1600/untitled.png)
How will I and my family pay for my treatment?
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Sometimes the hardest part about dying is the effect it has
on your family and friends. Helping them deal with your death helps you find
peace and comfort.
If you are not at peace with your death, ask the health
professional you especially trust to help you find peace. That person will help
or will get whatever help is needed. After all, it is the goal of all health
professionals, to give you comfort and health during life and peace to you and
your family at death.
Copyright © 1997 by the American College of Physicians. The
American College of Physicians gives permission to reproduce and distribute
copies of this plan provided it is not altered and its use is not for profit.
Users can remove the left column (containing the book contents and the word
“Top”) when making copies for distribution. For information on translation,
subsidiary, and for-profit use, contact David Myers. Phone: 215-351-2642; fax:
215-351-2644; e-mail: dmyers@mail.acponline.org.
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