2001 Case 2
How to treat 78 years old female who doesn't want to start dialysis.



Mrs. A was pointed out sclerotic kidney 7 years ago in the renal department of general
hospital.
But her condition was controlled  for a long time with drugs and diet therapy.
But 3 months ago, her kidney function got worse and preparation for dialysis is needed.

But she said "I don't want dialysis. I saw some patient who feels pain after re-operation
of shunt for dialysis." And the dialysis center is 40 minutes drive  from the patient's house.
She lives with his husband who suffering from liver schirrosis and it is hard to send her
to the center 3 times a week. She said "I could live as long as the average life expectancy
of Japanese, I wants to die peacefully in her home without any machine support.."

I want to ask some questions.

1)  How to treat this patients?
I think the patient's autonomy is important, but I need to tell the patent about the benefits
and the risks of dialysis and natural course once again for her wise decision.

2)  Is the indication of dialysis includes age in your country?
In Japan 200000 patients used dialysis therapy  and 30000 patients started dialysis
every year. It costs 5000000 yen (about 40000$ ) per year per patient and it uses
100000000 yen , 1/33 of all medical cost of Japan.  The number of elder people
who starts dialysis is increasing.
Dialysis is delivered from medical rehabilitation service and the cost is paid by the government.
I heard the patient over age 65 couldn't start dialysis in England.
How do you think this kind of medical cost problem?
(I changed the case to protect the patient's privacy)



Comments for this case



Mike Fetters(University of Michigan, Department of Family Medicine)



1)  How to treat this patients?
I think the patient's autonomy is important, but I need to
tell the patent about the benefits and the risks of dialysis
and natural course once again for her wise decision.

Standard response in the US is if she doesn't want, you certainly wouldn't try and force it on
her.  You may want to see our recent article in Critical Care Medicine 2001; 29:921-25 on
Conflict Resolution at the End of Life.

I would say that you it would be really important to make sure that she is not misinformed about
Dialysis. How typical was the case of her friend? How likely are the same complications for her?
Are there other similar patients who could advise her about what it is like to be on dialysis?
What is her option for peritoneal dialysis? FInally, if you have exhausted her fears and are
clear that dialysis is out, depending on the severity of her kidney disease, she may be able to
survive a long time just with a carefully controlled diet.

In the context of Japanese discussions, I often wonder about the family's opinion.  Are there
others involved besides her husband?  How does he and other family feel about it?


Yooseock Cheong M.D.
Department of Family Medicine
Dankook University, College of Medicine, Korea



This is my comment about your case..

Your case shows typical ethics conflict between patient autonomy and beneficience.
As I know, patient's autonomy is the most important than other principles in the
Western society.
In Korea, traditionally beneficience rule has been more important than patient's autonomy,
although nowadays that is changing rapidly. In this case, Mrs A's decision should be carefully
evaluated. I mean, she maybe has a skewed information about dialysis. She has very limited
information about dialysis from an unhappy case. Besides her living condition is really terrible
to accept proper treatment. I think a bad situation is not to be a major cause of treatment refusal.
Society should help her to overcome that kind of changeable barrier.  Duty doctor should give
balanced information about dialysis to her and try to find any convenient riding for her.
* We don't have age limitation for dialysis. Is there that terrible limitation in England?



Tom Tomlinson(Michgan State University)



I agree that the patient's autonomy is important. One of the most important
ways I respect her autonomy is to make sure she is making an informed
decision that is consistent with her deeply-held values and goals. With this
in mind, I would worry that she may be refusing dialysis because she fears
the pain and other complications of getting an infected shunt. But we might
be able to offer her an arrangement that helps avoid the bad outcome the
other patient experienced. We assure her that we will respect and support
her decision to _stop_ dialysis when complications arise that make the
procedure intolerable to her, and then we see what she says. If she accepts
this arrangement, then we have enhanced her exercise of autonomy by
providing a way for her to pursue the values of most importance to her. Had
we simply accepted her refusal at the start, our respect for her autonomy
would be only a hollow formality.

If she still refuses dialysis, we have learned something important-- that it
is not so much the risks of side-effects that concern her, but her desire to
die at home alongside her husband. And so, our next step would be to offer
peritoneal dialysis, if this would be medically useful and if it is
available in Japan, because this might be a way to allow her to preserve two
important values she may hold: her desire to live a bit longer with an
acceptable quality of life; and her desire to stay at home as much as
possible with her husband.

It is in this "dialogue" between the alternatives that we can offer, and
what the patient will accept, that we discover what is of most importance to
the patient; we discover how to most "respect her autonomy."

Perhaps Dr. Brody or another participant will comment on the economic costs
of dialysis, which are high in the United States as well.



Howard Brody(Michgan State University)



> 1)  How to treat this patients?
> I think the patient's autonomy is important, but I need to
> tell the patent about the benefits and the risks of dialysis
> and natural course once again for her wise decision.
>
        I agree with Tom Tomlinson's discussion of the role of respect for
autonomy in this case. Some would also wonder whether her current state of
uremia is high, and if so, whether this interferes with her ability to make
a rational decision. If a trial of hemodialysis could be arranged with
temporary vascular access at a nearby hospital or clinic, to see if she
still thinks and talks the same way when her urea nitrogen level is lower,
this would be one way to be sure that she is able to make a fully informed
and voluntary choice from the standpoint of her bodily chemistry and
metabolism. I agree that peritoneal dialysis might be an excellent option
for this type of patient if practical in your setting. A one-time trial of
peritoneal dialysis could also be done to temporarily normalize her urea
nitrogen levels and allow an assessment of her decision-making ability.

> 2)  Is the indication of dialysis includes age in your country?
> In Japan 200000 patients used dialysis therapy  and 30000 patients
> started dialysis every year. It costs 5000000 yen (about 40000$ )
> per year per patient and it uses 100000000 yen , 1/33 of all medical
> cost of Japan.  The number of elder people who starts dialysis is
> increasing and more than half is elderly people (>65years old).
> Dialysis is delivered from medical rehabilitation service and the
> cost is paid by the government in Japan.
> I heard the patient over age 65 couldn't start dialysis in England.
> How do you think this kind of medical cost problem?
>
        I have had several conversations with British dialysis unit
directors as part of our university's summer course in London, and they deny
that there is a strict age cutoff in England. I was told that there are
patients in their 80's or 90's receiving dialysis. I have also been told
that there used to be an age limit but there is not one today, because of
patient and family protests. I have also read articles saying that there IS
(or rather was) an age limit in the UK for dialysis. So I am not sure just
what the reality is.

        That is not to directly answer the question about the financial
implications of government coverage for dialysis. In the US it is even more
striking because the Federal government does NOT pay for most medical care
for most people, but it DOES pay for dialysis, under a special law passed in
the 1970's. Thus, end stage renal disease has become a special Federal
entitlement program, unlike any other disease. Besides showing the basic
irrationality of the US health care "system," this highlights the cost of
care for these patients as a portion of the total budget, and especially
allows us to look at the increase in the costs of dialysis as patients who,
in previous years, would have been considered too old or too sick to undergo
dialysis, are now routinely referred for the procedure. There is general
agreement that when Congress passed the law making end stage renal disease a
special entitlement, they envisioned a certain number of cases annually
requiring dialysis; and today there are somewhere between 4 and 10 times as
many patients being seen as dialysis candidates as were predicted initially
(proportionate to the total population).

        Having said all this, one would imagine there would be a political
outcry in the US about the costs of dialysis and demands to reduce the
costs. There is no such outcry. The political focus of the past several
years has been on how evil managed care insurance plans deny care to
patients, and trying to pass new laws to force these plans to pay for needed
care. So the political will in the US presently runs in the direction of
adding more entitlements to care, even if it costs more-- not in complaining
about the high costs and trying to find ways to reduce the number of
patients served. What will happen in the next few years, I will not dare to
guess.



The tentative result of this case (by Masashi Shirahama)



Thank you very much for the comments.
I send this case to the Japanese specialists on renal diseases, too.
I wanted to ask them the risk and benefit of the dialysis.
If she will not accept dialysis, she will experience some difiicult conditon
such as fatigue, dyspnea, sudden cardiac arrest etc.
Peritoneal dialysis at home is also started in Japan, but the neumer is
only 10%. Some older patients don't want to do dialysis by her/himself.
And I ask the specialist about the risk or burden of dialysis.
One of the specialist said patients feel fatigue the day after dialysis.

Depending on the comments from the specialis of renal disease,
I told the patient and her family about the risk and benefit of dialysis and
the natural course without dialysis.
Her younger son asked the patient to do the dialysis. And the good news
the dialysis center will open in the hospital next year(only 20 minutes
drive from her home)
I suggest her to go to the hospital to check her conditon and prepare for
the dialysis and the patient agreed to do so.
The hospital doctor in charge said to her "I also have cancer, if we can live
longer, let's live as painless as possible."
She accept the dialysis and mede the shunt for dialysis successfully.
Her condition is now stable, so she is now going to the hospital to
check regulary.

I thank all of the internet friends to send the patient and the family the
precise information needed to decide her dicision.



Tom MaCormick(University of Washington)



Thank you for sending the recent case for comment.
        I think you are correct in reviewing with the patient the
advantages of dialysis as well as the expected side effects and the
schedule.  (Her fear of a shunt revision may be somewhat inaccurate based
upon facts) However, her over-riding philosophy may be that the time and
inconvenience of dialysis may not be desireable---more "burden than
benefit" in terms of the patient's own values.  Here, it should be
remembered that of the deaths of patients on dialysis each year in
America, 13% of those deaths are attributed to the patient's decision to
stop dialysis----usually due to a perception of a poor quality of life.
These arguments are specifically related to "patient preferences" and to
"quality of life" arguments.
        One could argue about limiting access to dialysis based upon the
need for cost containment--however, that argument would be a "policy"
argument, which would take into account the health care budget, other
competing needs, political factors, and issues of fairness (justice) so
that people in similar circumstances would be treated similarly according
to pre-established policy.
        I hope these reflections are useful,best regards,  your colleague,
Tom McCormick



Philip Hebert (Family Medicine, Sunnybrook Health Science Centre, Tronto)



I would agree with Dr McCormick. Age or society based decisions
to limit life-saving care are morally questionable and contentious
socially. Patient-based decisions to limit care are usually the
most acceptable morally. Of course, refusals of treatment that
most patients would accept ought to be carefully explored to
ensure the patient truly understands & appreciates the consequences
of the decision & is not reacting due to delusional belief, inappropriate
affect, feelings of worthlessness, etc. The Physician's job is
to explore refusals of care & ensure such decisions are authentically
made. I would never impose such treatment on a competently refusing
patient, no matter what the family wanted.
Philip Hebert MD



If you kindly send your comments on this case, please send it to the
following mail adress.

Back to the English Home Page



Masashi Shirahama M.D.
Director, Mitsuse National health Insurance Clinic
Clinical Professor, Department of General Medicine, Saga Medical School
2615 Mitsuse, Kanzaki Gun, Saga Ken
842-0301 Japan
mailto:HQC00330@nifty.ne.jp