|
|
.
|
Morbidity and Mortality Data Associated with ESRD and Dialysis: Should Patients be Informed?
Christy Price Rabetoy, Department Editor
Giving Hope Through Information
Mary Knudtson, NP
Michelle Nelson, LCSW
Summit Dialysis, Inc.
Salt Lake City, Utah
Hope is to want or expect something. It is anticipation, trust,
faith, optimism, and expectation with which to plan. Many people
believe that to talk about death is to take away hope or an act of
giving up. I believe just the opposite. That to give information, to
fully disclose information to the family and patient allows them to
expect, anticipate, plan; and therefore it gives them hope.
Developmentally, psychologically, and spiritually people need
information to know what to hope for and trust in. Information also
gives choice. If given a choice, most people would choose a “good
death,” one that allows the individual to die with dignity surrounded
by loved ones. Many theorists believe that to accept death and dying is
not only essential to the complete realization of self, but an integral
of living life to the fullest.
In the past the medical standard was to hold back any grave news or
terminal diagnoses and to allow the patient to have false hope about
diagnosis or prognosis. Recently, it has become more accepted to fully
disclose information, especially in the arena of terminal cancer.
Research in death and dying (thanatology) has found that most
terminally ill patients were eager to discuss their feelings and learn
the truth about their condition. Dialysis falls into a place that is in
between diagnosis and prognosis. End stage renal disease is a chronic
disorder with varying etiologies. Patients typically choose dialysis to
prolong or sustain life and may have difficulty bringing up questions
about end-of-life issues. Physicians and dialysis staff may also be
resistant to talk about these issues because of the difficulty in
predicting the course of illness. On the other hand, often our own
feelings of discomfort around our own mortality guide our actions
towards patients.
Loss is a part of life and hope can continue through loss. Grief is our
personal response to loss. Individual patients will experience loss
differently depending on their developmental stage, age, and coping
mechanisms. Change, illness, or the loss of hopes, plans, and dreams
can trigger the emotions associated with grief. Patients cannot come to
terms developmentally or psychologically with loss without accurate and
thorough information. When does a dialysis patient start to grieve?
When they receive news of declining renal function? When they start
dialysis? When they are hospitalized or have access problems? If a
patient is encouraged to grieve, each loss becomes an opportunity for
acceptance and transformation. By denying death, we steal from our
patients the chance to prepare for it and to truly live.
Nephrology social workers are trained to interact with patients in
their time of grief and loss and to discuss palliative care and
end-of-life issues. Social workers are an integral part of the health
care team and should be used and given time to assist patients in the
important task of grieving. They are able to assist the patient and
family in processing and coming to terms with the many losses they
face. Social workers can also teach other professionals how to interact
with patients with sensitivity, honesty, and understanding. On average
a dialysis unit will lose about 20% of their population of patients per
year to death. Are we appropriately giving patients information to cope
with the loss of the empty dialysis chair next to them and their own
impending mortality? It is incredibly more difficult for patients to
understand these normal phenomena associated with chronic kidney
disease without accurate data from which to grieve, anticipate, expect,
and plan.
The “Truth,” the Whole Truth, and Nothing But the Truth... Informing ESRD Patients of Their Prognoses
Barbara J. Hasbargen, CNS, CNN
Ronald B. Miller, MD
Clinical Professor of Medicine, Emeritus
Director of the Program of Medical Ethics, Emeritus
University of California, Irvine
We physicians are too quick to see our
obligations in the negative, to see our moral obligation as “do no
harm.” This is not to say that the paternalistic notion of “therapeutic
privilege” is not deserving of consideration whenever one talks with a
patient. Occasionally, it may be appropriate to actually invoke the
therapeutic privilege of not informing patients of information that
would be harmful, at least psychologically. But therapeutic privilege
should be the exception, not the rule.
Statistical information, even when accurate, is not medical prognostic
certainty. It is information about the performance of a group of
patients who may or may not be similar to the group to which one wishes
to apply the data. The individual patient in front of you is but one of
that population, and thus could lie anywhere within (or rarely without)
that range of performance experienced by the group on whom the
statistical analysis was performed.
A physician is a fool to predict too specifically. In the mid 1960s,
for 5 years before he became my patient, John was referred for renal
insufficiency by a urologist in a small town to an eminent nephrologist
in a large metropolitan city. After a review of records and examination
of the patient, the patient was taken into one consultation room and
his wife into another. Each was told the patient had only a year to
live, but neither was told that the other was told. They lived the next
year in fear that everyday might be John’s last, but neither told the
other of their fear. Only after the year had long since passed, and
still several years before the patient would actually require chronic
dialysis and transplantation, did they confide their fears to one
another. What a tragedy! Although unique, this vignette is but an
example of the prognostic misadventures of physicians that are all too
common. Many, many patients have told me they outlived their
physician’s prognosis, and not rarely they outlived their physician!
An inappropriate response, albeit understandable, would be to not
provide prognostic information. Not only do physicians hate to be wrong
(in prognosis as well as in diagnosis), but understandably there may be
information that would be material to the patient that nevertheless the
nephrologist might prefer not to divulge. What if the survival data of
patients in a particular dialysis unit were below the national, state,
or regional average? Remember this is true of half of all units! How
often is information not provided patients? And how often is it not
provided even when the patient or a family member has requested it
subtly, or worse, overtly? And how often is information provided in a
manner that is not understood (most often unintentionally, but
occasionally purposefully)? And realize that patients may forget
information that has been provided to them. This is particularly true
if the information is provided at a time when the patient is
emotionally wrought, such as when informed he or she will need to start
dialysis “tomorrow.”
The “truth,” the whole truth, and nothing but the truth... . But what
is truth? Is statistical prognostic information the “truth” for your
patient? And if so, is that national data, regional data, the data of
your medical center or dialysis chain, or of your unit, or of your
patients in your unit? And how comparable are any of these populations
to the actual individual patient in front of you?
If you tell your patient that 20.9% of patients on chronic hemodialysis
die each year, as was true in 2002 (USRDS Annual Report, 2004), what
does that mean to her? Will she think there is a 1 in 5 chance I won’t
be here next year, and I better get my affairs in order? Or does she
say to herself, that’s pretty good odds, why are you worrying me with
such data? And do you tell her about the better survival data of
patients of one of your colleagues? Or of a competitor? And do you tell
her of the survival of patients after transplantation in your renal
center? Or in the university center 100 miles away? Do you tell her
that statistically the longer one stays on dialysis, the worse the
survival on dialysis, but also the worse the survival after
transplantation?
These are not insignificant questions. Several years ago I asked Joanne
M. Bargman, MD, a capable and thoughtful nephrologist at the University
of Toronto and the Toronto General Hospital, “What is the most serious
ethical problem in clinical nephrology?” Without hesitation she said,
“our failure to inform patients with end stage renal disease of their
[statistical] prognosis” (Bargman, 2002, personal communication), I
agree with her. It is difficult to tell patients the morbid truth. We
physicians don’t like to admit our failures, and we still think of
death as a failure rather than as an inevitability for which we should
plan and prepare in order to make the very best of our time between now
and then, but also to make that final journey as easy and as meaningful
for ourselves and our loved ones as possible. Most of us have
considerable planning and preparation to do. We have provisions to
make, contingencies to cover, and “affairs to put in order.” And most
of us put advance directive and estate planning off thinking there’s
always time to do that another day. But what if there is not? And what
if our doctor knows something we do not (that would help us plan for
our uncertain future), and he does not tell us?
Now, I think I have turned the question from “what should I tell my
patient?” to “what would I want my doctor to tell me if I were the
patient?” To so turn the question is perhaps the critical beginning of
finding an answer. But it is not the entire solution. What we
personally would want to be told may or may not be what our patient
wants or needs to know. We must ask, What would I want to be told if I
were the patient with not only his illness, his care team, his options,
but with his circumstances and experiences in life, his family, his
job, his savings, his insurance plan, etc., etc., etc? What one needs
to know in order to plan may be very different if one is a 35 year-old
married father (of three children, under the age of 10) who had to
start dialysis and lost his job as a traveling salesman (and thus also
lost not only his health insurance, but that for his family), than if
one is an 83 year-old widower, with no children, living comfortably in
a retirement home with prepared meals and with adequate savings no
matter how long he lives.
We should give patients the information they wish to have, that is
information material to their circumstances, and not information they
might prefer to hear because it is sugar coated. We should also, with
the patient’s permission of course, provide families information that
allows them to do their own planning, including their support of the
patient (for example, transportation, financial, obtaining medications
from pharmacy, psychosocial support, etc.). And information material to
the patient is not that simply related to his or her own personal
future, but also to that of his or her family. The patient needs to
know the source, accuracy, and generalizability of the statistical data.
To have a rough idea of what the patient might want to know, and to
consider what the patient “ought to know,” we need to know the patient
as person, as member of a family and, as member of a community, but
most of all as an individual with hopes and fears, aspirations, and
shortcomings. Now, of course, the patient may waive the right to
receive information, but also the patient has a right to redirect such
information to a spouse, child, or parent.
The big questions, as always, are: When to inform? How to inform? What
to inform? And what emotional support to provide? It may be easier to
answer when not to inform the patient then when to do so. We should not
provide information about the morbidity and mortality of end stage
renal disease on dialysis and transplantation at the same time as
informing the patient that he or she has reached end stage disease and
will need to start dialysis shortly unless a living donor is available
for preemptive transplantation. Preferably, provision of statistical
data regarding the prognosis of patients with end stage renal disease
both without and with dialysis and/or transplantation should be a
process beginning long before end stage disease, and periodically
thereafter, especially when there is any change in the patient’s
condition or circumstances.
How to inform? As well, and as accurately, and as compassionately as
possible! This is the art of medicine, and as Francis Peabody said,
“the secret of the care of the patient is in caring for the patient”
(Peabody, 1927).
What to inform? The “truth,” of course! Once again we should provide
whatever data the patient would like to know carefully accompanied by
an explanation of what the data mean and how they should be interpreted
and applied. To know what the patient would like to know, we need
simply ask, but having done so, we must then be silent and listen. And
the same is true for what the family would like to know, assuming the
patient allows us to answer such questions for the family. And after we
have informed the patient and family, there are two more things to be
done. First, we must ask what they understood, correct any
misunderstandings, and answer any follow-up questions. Second, we need
to provide emotional support to the patient and family (both personally
and via the dialysis team, especially the primary nurse and social
worker), and also enlist the help of the family in providing support
for the patient. And finally, let us not forget that this is not easy
for us, and we ourselves (the dialysis team) need support as well: It
is not a sign of weakness to be human.
References
Peabody, FW. (1927). The care of the patient. JAMA ,88, 877-882.
United States
Renal Data System (2004). 2004 USRDS Annual Data Report (table H.4,
page 514). Document obtained at www.USRDS.org/2004/ref/H_tables_04.pdf.
American Nurses Association (ANA). (2004). Nursing: Scope and standards of practice. Washington, DC: Author.
National Association of Clinical Nurses Specialists (NACNS). (2004).
Statement on clinical nurse specialists’ practice and education.
Harrisburg, PA: Author.
U.S. Department of Health and Human Services, Health Resources and
Services Administration. (2002). Nurse practitioner primary care
competencies in specialty areas: Adult, family, gerontology, pediatric,
and women’s health. Rockville, MD: Author.
The Controversies in Nephrology Nursing
department focuses on exploring ethical and clinical issues within the
nephrology clinic practice in a point/counterpoint format. Address
correspondence to: Christy Price Rabetoy, Department Editor, through
the ANNA National Office; East Holly Avenue/Box 56; Pitman, NJ
08071-0056; (856) 256-2320; or by emailing her at
christycpr@comcast.net. You may also log onto this column at
www.nephrologynursingjournal.net (clink on Department link) and email
your comments to the Editor (see Discussion Area). The opinions and
assertions contained herein are the private views of the contributors
and do not necessarily reflect the views of the American Nephrology
Nurses' Association.
|
|
|
|
|
|
Copyright 2005, American Nephrology Nurses' Association. Anthony J. Jannetti, Inc., publisher. An iNurse Web site.
|
|
