End of Life Care
There are a great many care options for the last days of life. Emotional
and philosophical concerns, deciding where to receive care, and legal documents
(such as advance directives, a health care proxy, and a living will) need to be
discussed, decided, and legally secured to ensure you receive the treatment you
want.
By Dianne B. Scheinberg, MS
November 23, 2005
Medicine today has the power to prolong life in two different ways. Many of us
will live longer and fuller life spans because of medical advances, lifesaving interventions,
and new prevention knowledge. Others of us will find our last days and months prolonged—sometimes
in an unwelcome way—by life support technology and practices that enhance neither
the quality of our lives nor our deaths.
Life support can breathe for us, eat for us, and substitute for vital organs.
Sometimes a partial (or full) recovery from a terminal illness or incapacitated
state is possible; but even when there is no hope of revival, doctors may sometimes
take extraordinary measures. Some say that these choices derive from doctors' training
in resisting death at any cost, others point to liability risks if any potentially
curative intervention is overlooked. But increasingly, doctors, along with patients
and family members, fail to recognize when curative technology is no longer indicated
and a different technology—end of life care—should be brought into play.
Talk of dignity, quality, and sanctity of life has been heard ever more frequently
in hospitals, medical schools, and the media. These terms have different meanings
for each of us, and can sometimes be used as arguments for or against life support.
At the same time, dignity and quality of life are important to all of us, especially
when we are very ill and potentially near the end of our lives. So who should decide
what care is life-saving as opposed to death-prolonging? You.
There are a great many considerations to end of life care, including: emotional
and philosophical concerns, deciding where to receive care, and legal options. The
one thing that everyone agrees on is that each of us should ponder, discuss, and
legally establish our approach to the management of life-threatening illness before
a medical crisis occurs.
Emotional and Philosophical Matters
You can begin by asking yourself some tough emotional questions. What are your
fears: pain, loss of dignity, machines keeping you alive, or dying in a strange
place? Fill in the blank: "My life is only worth living if I can ___". Is life defined
by a heart beat or a working brain? Whom do you want to make decisions for you if
you are not able to communicate? Discuss options with your doctor. Seek guidance
from your religious leader. Talk with family. Above all, make sure that family members
know what your choices would be under a variety of serious situations; if possible,
put your choices and values into writing.
Care Options
The last days of life can be spent in your home, a nursing facility or a hospital.
These facilities generally seek to cure, rehabilitate, or support life. If you are
seeking curative care or aggressive medical treatment, a hospital is usually the
best choice. Today many hospitals are adept at balancing curative and palliative
care when the end of life approaches. Palliative care, perhaps most often given
in the hospice setting, provides treatment that enhances comfort and quality during
the last days of life. This type of care seeks neither to hasten nor to postpone
death, but rather to provide relief from pain and discomfort. While services may
vary from community to community, in many parts of the country palliative care can
be supplied either in a hospice facility or in your home.
Legal Options
For most of us it is very hard to imagine how we are likely to feel when faced
with a serious and potentially fatal illness or injury. It is perhaps only human
nature to prefer to wait until the crisis is upon us and then communicate our intentions
to the nurses and doctors providing our care. Unfortunately, there are many scenarios
that can interfere with one's ability to communicate. For example, it is impossible
to tell a doctor your treatment decision while on a ventilator (mechanical breathing
apparatus) or when unconscious. Fortunately, there are legal solutions to this problem.
Among these legal solutions are:
- Advance directives
- Health care proxies
- Living wills
- Do not resuscitate orders
Here is some information about each of the above:
Advance directives are written legal documents that state your wishes if you
can no longer speak for yourself. With these documents in place, medical personnel
and loved ones don't have to guess what you would prefer or make decisions you would
not want for yourself.
A Health Care Proxy names someone to make medical decisions for you when
you are not able to make such decisions. This person should be someone you trust,
who knows what treatments you would want or would reject, and who will respect these
preferences. Your proxy does not have to receive specific instructions from you
and can make decisions as if she or he were in your situation, but conscious and
able to communicate.
A Living Will states your requests regarding life-sustaining medical treatment
(for example, a feeding tube, breathing tube, or surgery) and is only effective
if you are unable to communicate. These instructions for treatment or refusal of
treatment can be made as broad or specific as you wish. For example, you can ask
that your life be prolonged as long as possible whatever your state of consciousness,
or you can state that you do not want extraordinary treatment to maintain life if
as a result you will need constant care or not have an existence that seems of adequate
quality to you. You can also address specific circumstances that commonly arise
at the end of life (dementia, trauma, or coma).
A Do Not Resuscitate order instructs medical personnel not to bring you
back to life if you stop breathing or your heart stops.
Each of these four legal solutions requires that you complete a document that
will become part of your personal medical file. This way, you or your family members
can ensure that, in the event of a hospitalization, all of your caregivers know
about your written wishes and incorporate them into your care plan. For further
information, you can talk to a lawyer, explore the numerous books written on this
topic, or use the internet resources listed below.
It is important to note that advance directives are not iron clad, and no single
one of the four choices above can anticipate every situation that may occur at the
end of life. Since it is difficult to anticipate every medical possibility, a living
will might not precisely address what actually happens to you. Additionally, no
matter how carefully you try to think about what might happen to you as you write
your living will, you still run the risk of this document being misinterpreted by
doctors or family. So, even with a living will in place, it is still essential to
have someone you trust—preferably named as a health care proxy—to make decisions
for you in the case of unforeseen circumstances. Your proxy should know you well
and spend considerable time discussing your philosophies, expectations, and values.
Combining a living will with a designated proxy is a particularly smart way to prepare
for your end of life care.
No one wants to think about the unpleasantness of life-support: whether its end
result is to prolong our lives or to prolong our deaths. But when life support no
longer offers hope of quality living, decision must be made. No one can make such
decisions better than you. Choose your options while you can speak for yourself.
The questions are tough, but the issues are life and death: yours.
Créez votre testament, votre procuration et votre testament de vie sur
https://www.legalwills.ca/fr/.
Pour plus d'informations, contactez :
LegalWills.ca
Courriel :
[email protected]
Internet :
https://www.legalwills.ca/fr/