Table 2. Dialysis as the Norm: Clinicians Do Not Readily Accept Patients’ Wishes Not to Start Dialysis.

Patient No.	Service	Exemplar Quotes From the Medical Record
Repeated questioning
1	Nephrology clinic	I feel that there is no need to discuss the dialysis anymore with him as he is quite determined that he would not want to accept any artificial means to sustain life, including kidney dialysis.
2	Oncology clinic	He has severe renal insufficiency and now has hyperkalemia. He refuses dialysis.
	Primary care clinic	He refuses to go onto dialysis and was told that the consequences of not going could be death. He says that he will die then.
	Nephrology clinic	He has refused to consider dialysis every time I have brought it up to him.
3	Nephrology: hospitalization 1	The patient again refused dialysis.…I discussed the case with all the nephrologists at [the nephrology practice].
	Medicine: hospitalization 2	Was contacted on the phone by [the cardiologist] to discuss dialysis. He categorically refused and thought that all this has been settled during his previous admission.
4	Nephrology clinic	He seems to be willing to do dialysis, if it was a life-or-death situation, but is not too anxious to get it started before then.
	Nephrology clinic	He is unclear about whether he would do dialysis if he needed it.
	Nephrology clinic	We again discussed options of dialysis and he seems a little more resolute now that he would not agree to dialysis should it become necessary.
5	Emergency department	I called [patient’s] son to again address code status and dialysis status.…He reiterated that per his father’s wishes and the family’s wishes, they did not want anything done. They did not want to start dialysis.
6	Inpatient medicine	The nephrology team came on rounds and readdressed the issue of dialysis. The patient seemed somewhat annoyed with them reapproaching her with the same issue and when they left she told this writer that she would appreciate it if the renal doctors do not come around to see her.
7	Nephrology clinic	Repeatedly every time asked says he will never agree to dialysis, and will die first. He gets angry, belligerent when asked this question, and says it is his right to refuse any care he chooses.
Consideration of competency
8	Outpatient social work	Patient states he is not depressed or suicidal and would never hurt himself intentionally, but would rather die than be dependent on machinery.
9	Nephrology clinic	Patient seems scared of hemodialysis, and unable to logically explain apprehensions. Continues to state he wants things done to get better so he can continue living, yet states his life “schedule of activities” if interrupted by time spent on hemodialysis would not be worth living and he would rather die.
10	Inpatient medicine	He understands what is involved in dialysis and the consequences of his decision (death), but has made an “educated” decision not to have dialysis.
11	Ethics committee	The question centers around concern that the patient’s history of schizophrenia might invalidate his prior and current expressed wishes for no hemodialysis.
12	Inpatient medicine	He has expressed his wish not to receive dialysis for a long time.…He has had several personal circumstances, including the recent death of father and a son that may incite his depression and refusal of treatment. We will request psychiatry reevaluation.
13	Ethics committee	The ethical question according to [the nephrologist] is that although Veteran does not want dialysis, which is the most vital treatment, without which he will not survive, he has declined to be on Do Not Resuscitate status.
Encouraging dialysis
14	Outpatient social work	Had numerous family meetings with patient and his family in an attempt to convince patient to accept dialysis but patient has always stated without fail that he did not want dialysis.
15	Nephrology clinic	Patient is adamant that he will not consider dialysis under any circumstances—seems to understand that the choice would be death.
16	Chaplaincy	His wife is supportive of what he decides to do, but related that she feels guilty in relation to the doctors who are urging dialysis.
17	Geriatrics clinic	He has said in past he doesn’t want dialysis.…I advised that he can accept this for a short time and could still decide to stop this afterwards.
18	Inpatient medicine	Willing to offer dialysis as bridge to wedding or chemotherapy…he said quite clearly that he did not want dialysis or chemotherapy, he just wanted “to be comfortable.”
19	Inpatient nephrology	Patient has steadfastly refused to be placed on chronic dialysis. In terms of short-term dialysis while patient is hospitalized, this was being considered on an emergency basis only (ie, hyperkalemia or fluid overload refractory to medical management).
20	Home-based primary care	[Patient] reports that he does not really want to do [dialysis] but his wife states forcefully, “You have to”…reviewed that her yelling and “telling” him what to do were not the best ways to approach.
Preparing for patients to change their mind
21	Nephrology clinic	Still in denial about his kidney disease and his need for hemodialysis in the near future—repeat discussion with patient and wife regarding compliance.
22	Primary care clinic	Adamantly and clearly refusing dialysis, even to consider dialysis; my concern is that this may change as he begins to feel unwell.
23	Nephrology clinic	We discussed hemodialysis in some detail…he does not want access placed and does not want to pursue dialysis as a life-sustaining measure, although this will need to be discussed further, particularly if he develops an acute indication.
24	Nephrology clinic	Told him again he needs to start dialysis to prolong life. He again refused, saying he will die rather than do dialysis. Told him he may not last a month or 2 weeks or longer. He had no questions, didn’t want to be bothered with me nor my mention of dialysis…would avoid fluid overload and pulmonary edema as that would force the issue of dialysis or death.
25	Outpatient social worker	Patient confirmed that he wants a referral for home hospice…he was educated that he can change his mind at any time and let us know if he wants to discontinue hospice and start dialysis.
26	Nephrology clinic	He does not want to go on hemodialysis, and does not want to have venous mapping at this point. We’ll try to convince him of doing so, at least to have the information in the event we need to plan for creation of an arteriovenous fistula once he agrees.