What follows is a composite of remarks I made in response to an essay by Dan Tippens at Scientia Salon (1), and to a responding essay by Daniel Kaufmann that soon followed (2). The question is, does the condition and situation of late-stage/end-stage patients in health care mean that they have a lesser ethical obligation to others, especially their caregivers, and to what degree? I was especially concerned with an example given by Tippens, concerning a friend of his who volunteers in hospice. It set off a wide range of memories and thoughts I accumulated while working as a licensed practical nurse in geriatrics for 12 years. (If my responses sound a little dry, I confess that the emotional content of the memories are such that I would prefer to keep them to my self. Nursing can be very satisfying, but not always in a way that one can communicate; and nursing is always stressful and frequently frustrating.)
From: “Yes, terminal patients still have moral obligations,” by Daniel Tippens:
“A patient can also prevent psychological trauma by keeping the volunteer out of morally problematic situations. For example, a former co-volunteer, call him Joe, shared this anecdote with me. Joe had been visiting a patient, call him Sam, for some time. Sam’s primary caretaker was his son. Sam, nearing the end of his life, revealed to Joe that his son was, in fact, adopted. Sam had never shared this with his son, and asked Joe not to tell him. Joe was then thrust into a morally problematic situation. On the one hand he felt he ought to respect, for both legal and moral reasons, Sam’s request for discretion. On the other hand, Joe felt that this information was relevant to what the son’s duties or obligations were to his father in this situation. After all, being a primary caretaker for a terminal patient is a full-time arduous task; one that requires much thoughtful deliberation. Joe unfortunately experienced significant stress from this event. His focus declined at work, and he couldn’t sleep as well. Perhaps Sam had a moral obligation to refrain from revealing this secret to Joe, thereby reducing his mental anguish.”
As a nursing student, I was taught non-judgmentalism and non-intervention (except in matters directly health related). People generally come to the health care system because they’re hoping to get better, or because they know they won’t get better. My field was geriatrics, working with people who knew they would not get better. Indeed, part of the process of living through the late aging experience is coming to terms with the fact that health will continually decline; there will be remissions and stabilizations, but basically problems and pain will increase towards an end point.
Given this, it’s a real question how possible it is for patients to maintain the kind of reasonableness needed to engage ethical responsibility. This is especially true in the nursing home (my usual place of employment), since the situation itself – stuck in a limited, enclosed space, having very limited choice over food, entertainment, socialization – is patently absurd. Nurses endure considerable stress – but how much greater the stress for those finding themselves in a near-prison-like environment, simply because of declining health and economic circumstance.
In general, in periods when their health was stable, late stage geriatric patients I worked with were pleasant, sociable, and grateful for our nursing efforts. Of course there were those demanding, insulting, uncooperative. They felt they had been ‘masters of their fate’ for decades, and now found themselves the victims of fate. I suppose we can hold them accountable for this response, but why would we want to? Why now, as these people are passing, do we feel any need to find a moral right to their behavior, or think they still owe us anything, other than to be who they are?
I’ve been reading Tetsuro Watsuji lately; he makes an interesting case that building a ‘top-down’ argument for ethics – that is, trying to determine principles first, that an individual must be accountable for – is simply a mistake. He argues that ethics always must be thought through ‘bottom up,’ on the presumption that ethical behavior always begins in social relationship. Rather than beginning with the question, ‘what obligations remain for the dying person in hospice?’ we should begin by asking what ethical behavior actually occurs in the actual hospice social context.
Joe really needs to review what his role demands of him, and check his own judgments at the door. Sam can’t use Joe’s judgments, and doesn’t need them. He needs what a volunteer provides (as I remarked previously) – reminder that he is a valued member of the community even to the last. Caring demands that.
We should remember that people will largely retain the personalities they’ve developed over a lifetime of experience. It’s placing an unnecessary burden on them to demand that they become someone wholly new in hospice – although, of course, perhaps paradoxically (perhaps not), the suffering and stress of their condition will redefine their personalities as their condition worsens. In instances of health crises, any personality could change radically – usually the response is extreme fear and anger.
Understanding that such responses are inevitable under the circumstances, is a necessary component of good nursing practice. In that process, the nurse cannot afford responding to anything the patients say or do (short of endangering violence or attempted sexual assault) in a way that asserts the nurse’s own personality or personally held opinions or feelings.
So I’m leaning toward holding that questions concerning the ethical obligations of late-stage patients are largely irrelevant to questions concerning good caregiving practice.
(Of course this is generalization; in actual practice, interaction between patients and nurses will involve personalities; but the caregiver’s obligations are held to a standard that includes setting aside personal interests, and allowing patients considerable lee-way in dealing with their declining condition.)
Does a volunteer, unlike professional caregivers, enjoy a privileged position that triggers the relevance of patients’ ethical responsibilities in these discussions? I suggest not.
What does the role of the volunteer in the health care system really amount to? It’s not really a job – jobs get paid. Yet it provides a service: The volunteer effectively represents the community, reassuring patients they are still considered members of that community. But that’s caregiving, held to the standard argued above. Non-judgmentalism and non-intervention remain the guiding principles
One problem is that we are not simply dealing with people, but with actors in performance of social roles. “Dying patient” is a specific social role, but one that few seek out to play. “Caregiver” is a more generalized role, encompassing several more specific roles – family caregiver, medical caregiver, nursing caregiver, etc., and of course volunteer caregiver. The family caregiver role is also one that is rarely sought out; but the other caregiver roles are acquired by choice. For professional caregivers, the satisfaction in the role may be acquired from many directions; most importantly, financial reward. Often, even professional caregivers suffer “‘burnout’ (or compassion fatigue),” and consequently receive many fewer satisfactions from their positions other than money; but the money is enough to keep them performing the role. The volunteer of course relies on other satisfactions than money, satisfactions that are socially tentative, so burnout is an end stage when such satisfactions can no longer be acquired.
I rephrase the issue in this way, because it is not just a matter of volunteers undertaking a certain job with certain risks, certain responsibilities, certain satisfactions. The job creates a role with fairly strict definitions; and it it is the role that gets enacted by the person in performance. We want to say that the relationship is between Joe the caring person and Sam, who’s unfortunately dying. But in fact the situations demands that the relationship be between “Volunteer Caregiver” and “Dying Patient.” Since “Volunteer Caregiver” is a sought-for, freely accepted role, and “Dying Patient” is not sought-for, and frequently unaccepted, but impelled, the burden of obligation rests on the shoulders of the caregiver.
Part of this obligation involves non-interference in the Dying Patient’s effort to enjoy what remains of life on his or her own terms, and non-judgmental detachment from views or feelings the Dying Patient expresses.
These obligations do have the benefit of releasing the burden of certain other more general social obligations. Joe is simply wrong to see his situation (regarding Sam’s adopted son) as an ethical dilemma. The Volunteer Caregiver’s primary obligation is to the Dying Patient. If Joe wants to get personally involved, he can abdicate his Volunteer Caregiver role and return to Sam and ask if the son is indeed Sam’s or adopted, and based on that confirmation, report to Sam’s son. But this would violate social norms within the context, and the Hospice staff would be right to caution Sam not to say anything, and to ask Joe to leave and threaten police action should he not.
When we assume social roles, we not only acquire the burden of their responsibilities, but the additional burden of having assumed the role by choice. Such roles require considerable personal investment; but it is important to know when to limit personal investment so as to avoid violating the obligations of the role. Caregivers need to perform the “Caregiver” role; bringing their personalities into the role endangers the welfare of the patients.
We can see this when considering the legal and social context in which these roles are generated. A lot of the issues here intersect with regulatory questions about patient rights and responsibilities. Not all such issues are covered by existing regulations, but the regulations carry implications. Should Joe tell Sam’s son he’s adopted, he may not be exactly violating Sam’s right to privacy, but the implications of the regulations are that his behavior would be considered unethical. Conversely, this releases him from any ethical responsibility should he choose not to say anything to Sam’s son. All this should be explained to him in his training as a volunteer; unfortunately, volunteers are often thrown into the mix without much training.
Does treating patients as though they had lesser responsibilities due to their situation treating them like children or diminishing them? The regulations governing patient responsibilities (and their implications) are specifically designed to avoid this. What these regulations are designed for is to enhance the patient’s ability to remain themselves as much possible, given their condition (and thus dovetails with their rights). Should their behavior prove seriously egregious, they will receive counseling; there will also be family meetings, and efforts to determine whether the care given is appropriate given the patient’s antagonism to it – and other such efforts to find some way to meet the patient’s needs within community resources available.
However, regulations concerning patient responsibilities, since they are maximized in the interest of the patient – do not cover the kind of question you raised, about avoiding putting caregivers at ethical risk. Not only has Sam not violated any regulation with his confidence, he hasn’t transgressed any boundary implicit in those regulations.
One problem here is that Joe appears to be assuming a) that Sam has told the truth; b) that he has an ethical demand greater than that of the role he performs; and, c) that breaking confidence might lead to an ethically justifiable outcome.
But he doesn’t know the whole situation. Sam’s son might be a small-minded sadistic creep who secretly hates his father, and then spends the next weeks making Sam’s life miserable. Or, to discover his blood parents, he may force Sam to spend his last days in litigation. Or he may advertise the situation, causing Sam embarrassment in the community. (And court-ordered DNA tests may prove that, guess what? Sam’s son really is Sam’s son, and Sam was lapsing into a fugue when he spoke to Joe.)
Is Joe really willing to go down any of these roads because maybe his ethical concerns trump health-care policy?
It should be remembered that health-care communities have very limited knowledge of the people who come to to them for care. The complexities and subtleties of the patients’ previous lives and experiences are beyond our ken, let alone our judgment. Really, the best attitude is to let go and do what the role demands; if followed sincerely and with compassion, the role will absolve us of a multitude of sins. (And be assured, someone will tell us when they don’t.)