Yes, terminal patients still have moral obligations

hospice12by Daniel Tippens

[This is the first of two essays, by Dan Tippens and Dan Kaufman, about the concept of moral obligations. Kaufman’s response to Tippens will appear later this week.]

When I was eighteen, my father was diagnosed with terminal brain cancer and given a year and a half to live. This prognosis was accurate. As his condition worsened, we received help from hospice care — a service which facilitates the passing of terminal patients. A 2014 report estimated that around 1.6 million patients received help from hospice care in the United States [1]. Of this number, over 1.1 million died within a hospice program. In 2011, an estimated 44.6% of all deaths in the United States occurred under an end-of-life program [2]. These facts coupled with my father’s death led me to realize that, given the ubiquity of cancer and other progressive terminal diseases, many of us are likely to receive help from end-of-life services. It seems obvious, then, that ethical discussion concerning palliative care is important.

Most of the debate thus far has revolved around the moral obligations of practitioners and family members. This is probably because these parties have a lot of power over what happens to the patient. Either they execute decisions for the patient, or the patient himself is susceptible to their wishes and demands. However, not many have talked about what the moral obligations of the terminally ill are, or whether they have obligations to anyone at all [3]. Given that we have close to a 50% chance of winding up under a palliative care program, we should ask ourselves what our moral obligations will be if we become a dying patient.

Of course, if a terminal patient has a disease that destroys his ability to exercise self control he isn’t a moral agent at all, so let’s set these sorts of cases aside. The patients I wish to focus on are those who are living with a known deadline to their life, but still retain much of their self-control, autonomy, and rational faculties. Consider a patient with advanced hepatocellular carcinoma (a primary liver cancer) which has not metastasized to the brain. This patient, though living with the knowledge of his impending death, will still have all of the aforementioned abilities at his disposal. These sorts of terminal patients, I think, have a unique moral obligation to society that they should try to uphold. But first, let’s discuss generally what kinds of obligations terminal patients have. Perhaps we can gain some insight from Oliver Sacks who, after learning about his impending death, said this:

“I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.” [4]

This passage not only reveals what a terminal patient may want, but also hints at what kinds of obligations he might have: like most of us, he has obligations to his family members, himself, and to friends around him.

But familial, personal, self, and interpersonal moral obligations aren’t my main concerns here. This is because many terminal patients already desire to uphold these duties, making these tasks easier. Indeed, this is reflected in what Sacks said about what he wants to spend his time doing. The kind of moral obligation that is harder for a terminal patient to uphold is, however, also captured nicely by Sacks:

“I still care deeply about the Middle East, about global warming, about growing inequality, but these are no longer my business; they belong to the future. I rejoice when I meet gifted young people — even the one who biopsied and diagnosed my metastases. I feel the future is in good hands.”

Obligations to be concerned about, and take action on, things like global warming and growing inequality are societal obligations; duties that we have to our community or toward humanity. Many terminal patients, Sacks included, say that they feel “detached” from these issues [5]. At my father’s memorial service my brother said, “As my father approached the end, I could see him letting go of the pains of the world.” This “letting go” is natural, but it also makes societal obligations harder to uphold.

I do not think that a terminal patient is relieved of all of his societal obligations when he learns of his impending death. On the contrary, in addition to the ordinary societal obligations we know of, I think he is in a unique position to uphold a duty which will affect current and future end-of-life patients. Here I wish to focus on one duty in particular, but the way I defend it can be applied, mutatis mutandis, to other societal obligations as well.

When my father became bed-ridden, hospice volunteers became a source of relief for us. They would help us with menial tasks, comfort us, and sometimes just provide a listening ear. After my father died, I wanted to comfort others the way other volunteers had comforted me. So, I volunteered for hospice. Before starting, I did some preliminary research and found out that the depth of support that hospice volunteers provide is much greater than I had expected.

Studies have shown that patients tend to live longer and with a higher quality of life when they have a regular hospice volunteer to interact with [6]. Volunteers provide the patient’s family with constant relief and support during their difficult time. Additionally, they act as the “eyes and ears” of the practitioners overseeing the patient’s case by reporting signs of patient deterioration and distress. This information flow no doubt contributes to the increased longevity and quality of life mentioned above. Volunteers are so valuable, two researchers had this to say:

“Without the volunteers’ nonmedical services, it would be very difficult to offer quality end-of-life care to dying patients and their families.” [7]

Yes, a volunteer is one of the cornerstones of good hospice care. Having said that, the need for hospice volunteers is unfortunately greater than the supply. Many volunteers, especially young ones, tend to experience “burnout” (or compassion fatigue). Volunteers quit due to stress resulting from emotional interactions, time commitments, or lack of external appreciation from hospice coordinators or patients. Studies offer different percentages of burnout rates, but the number falls somewhere between 17%-43% within a year of service [8]. Considering that there is already a paucity of volunteers, these percentages are quite troubling. Volunteers should be seen as a rare resource that improves the quality of life of many dying people, but that the public is depleting.

Typically, people try to think about what hospice programs can do to improve volunteer retention rates, and of course this should be, and is being, explored. Few think to claim that perhaps the terminally ill patients who are receiving help can themselves be part of the solution, that they have a moral obligation to contribute, and indeed are uniquely situated to do so.

I think a terminal patient has a moral obligation to prevent psychological trauma for volunteers. As the aforementioned studies indicate, this would prevent burnout and increase volunteer retention rate. A patient can mitigate trauma in a variety of ways. For one, volunteers have reported that much of their satisfaction in the job comes from acts of appreciation from patients. A simple “thank you” or a gesture of kindness goes a long way to improving the motivational state of a volunteer. For myself, gestures of kindness were psychologically cashed-in for months of motivation. Surprisingly, these aren’t as common as one might expect.

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.

A few clarificatory remarks are needed here. First, people have told me that they really can’t understand why learning that one is adopted would affect one’s obligations to their terminal father. But there certainly are cases where finding out that one is adopted or has been lied to (had information withheld) has led to a decision not to be as involved as a caretaker. It is important to recognize what a huge commitment being a primary caretaker is; one’s life really does revolve around the patient who is being cared for. Like many volunteers, Joe knew that this bit of information matters to some people. So it is understandable why he might have felt that Sam’s son deserved to know about the adoption.

Second, you might think that since the volunteers signed up for this job, it is the volunteer’s duty to put up with the difficulties that come with the job, otherwise that volunteer really is in the wrong line of work. My response to this: while it is true that part of the job of the volunteer is to care for the emotional well-being of the patient, I do not think that this fact takes away the obligations that patients might have to refrain from causing emotional pain to a volunteer.

Imagine that a patient would derive great happiness if he were allowed to insult and berate the volunteer by targeting the volunteer’s insecurities [8]. This patient insults the volunteer in various ways aggressively and with resolve. Just because it is the volunteer’s job to care for the patient, do we want to say that the patient does not have any obligation to refrain from engaging in this behavior? I would think not.

The idea in the case of Sam and Joe is supposed to be similar, albeit to a lesser degree. Sure, Sam’s care is the job of the volunteer (Joe), but does that automatically mean that Sam doesn’t have an obligation to refrain from throwing Joe into morally problematic situations? I don’t think so.

Perhaps, then, Sam and other terminal patients have a moral obligation to improve retention rates of hospice volunteers. Hospice volunteers are a scarce societal resource that improves quality of life during an experience almost 50% of us will have to endure. Our moral obligation to improve retention rates is like our moral obligation to conserve energy despite some costs to ourselves.

Now, I can imagine some pushback against this claim. Perhaps a terminal patient has a “get out of jail free” card regarding his moral responsibilities. To say otherwise may be construed as a lack of empathy for the patient. I think that this reaction is not only incorrect, but it is also a view that robs terminal patients of their dignity. Treating the terminally ill as beings who aren’t capable of robust moral competence is like treating them as young children. Not only do we intuitively think this is not the way we ought to view them, terminal patients themselves generally do not want this. Many report that they want to be treated with “normalcy.” Part of this involves our acknowledgement of their moral standing — that they still have moral obligations.

That said, terminal patients have some moral obligations, but certainly fewer than we do. This is because they may be physically capable of doing less than the average person. And as Kant famously reminded us, if you are morally obligated to do something, this implies that you can do that thing. If I am a terminal patient who is also a victim of locked-in syndrome, it doesn’t seem right to say that when I don’t help my sick daughter I have violated some moral obligation to do so.

Still, terminal illness does something more to our intuitions about moral standing. I think that the right way to account for this is to distinguish between the moral status of an action and an agent’s culpability. An agent can perform a morally wrong action, but this doesn’t mean he is fully culpable; he was wrong but doesn’t deserve as much blame. To put this formally, terminal patients have moral obligations, but also have a prima facie partial excuse should they fail to uphold them [9].

To illustrate, consider a student with a homework assignment due the next morning. Unfortunately for this student, after he finishes his homework, his canine companion mistakes it for a tasty treat, and consumes the assignment with dispatch. Compared with his fellow classmates, the amount of effort required to turn in his assignment on time is much greater. As a result, he doesn’t turn it in. After the student explains what happened, his teacher says that he should have turned it in, but that she doesn’t blame him for not doing so given the circumstances. In other words, she won’t hold this failure against him. Similarly, the emotionally tumultuous mental life, or the feeling of “detachment” from certain issues, forces a terminal patient to put in much more effort to uphold her duties. So like the student, we won’t blame her as much should she fail to do so [10] [11].

So the terminally ill have fewer moral obligations than we do. Even though they can uphold the duties they still keep, they have reduced culpability should they fail to do so; they are swimming against a stronger emotional current than you or I. Hospice patients are in a unique position to improve current and future people’s well-being who must pass through end-of-life care. While they use the volunteer resource, they have an obligation to promote the retention rate. This, it seems, is one of their moral obligations to society. Even if we won’t be as culpable for failing, I hope that if and when we enter the phase of our life where we are patients at a hospice, we will try to uphold this moral duty to society.

_____

Daniel Tippens is a research technician at New York University School of Medicine. He is also an assistant editor for the webzine Scientia Salon.

[1] NHCPO Facts and Figures Hospice Care in America, 2014.

[2] NHCPO Facts and Figures Hospice Care in America, 2012.

[3] Most authors writing on topics related this subject only address the moral obligations of the terminally ill indirectly. For example see Manik Chahal (2010) Off-trial access to experimental cancer: balancing the needs of individuals and society; J Med Ethics 2010 36: 367-370; doi: 10.1136/jme.2009.032466

[4] Oliver Sacks, “My Own Life,” The New York Times, February 19, 2015.

[5] For an interesting discussion on how changes in what we care about (caused by something like the feeling of “detachment”) relate to practical decision making in ethical situations, see Moller, Dan (2014) Drunk and in the Mood: Affect and Judgment, Journal of Moral Philosophy 1-21, doi: 10.1163/17455243-4681061

[6] Becky J. Starnes MBA & Walter W. Wymer Jr. DBA (2000) Demographics, Personality Traits, Roles,Motivations, and Attrition Rates of Hospice Volunteers, Journal of Nonprofit & Public Sector Marketing, 7:2, 61-76, doi: 10.1300/J054v07n02_06.

[7] Claxton-Oldfield S, Claxton-Oldfield J. Keeping hospice palliative care volunteers on board: Dealing with issues of volunteer attrition, stress, and retention. Indian J Palliat Care [serial online] 2008 [cited 2015 May 30];14:30-7.

[8] As a matter of fact, this kind of thing actually does take place. Admittedly, however, this tends to happen with patients who have really deteriorated and fallen into the class of patients we have excluded for the purposes of my paper. However, this does not affect my argument, as I am only appealing to this case as a thought experiment to establish a point about moral obligations more generally.

[9] One might think that a terminal patient’s actions toward society are actually cases of supererogation. An action is supererogatory when there is no moral obligation for an agent to perform the action, the action was costly to the agent, and the action was morally praiseworthy. For example, suppose you and I are both of equal consequential value. We hold the same type of job, the same skill sets, the same family and friend relations, etc. I am standing in the street and a car is heading toward me. You know that I will be killed by the car if you don’t push me out of the way. You also know that if you push me out of the way, you will be killed. If you were to save my life, some might think your decision to save my life was supererogatory; it was not morally obligatory, it was costly to you, and it was morally praiseworthy. I don’t have the room to discuss this point further, so I will just flag it here.

[10] A critical reader might not like the case since the action of turning in one’s homework is one which lacks any moral component. So now consider the case of a man who comes home to find his wife cheating on him. This places him into a state of emotional chaos. When he proceeds to physically hurt his wife and the man she was with, we would say that what the husband did was morally wrong, but he is less blameworthy since his state of mind made it more difficult than normal to exercise self-control. Indeed, our laws reflect this intuition by classifying these actions as “crimes of passion,” which often have reduced punishments attached to them.

[11] It is important to note that there are two different mental states I am talking about which might contribute to providing an excuse for terminal patients. These two states are reactive attitudes and affective states. A reactive attitude, as I classify it here, is an object-directed attitude which doesn’t cause a change in what we value; i.e what we care about, desire, and find important. For example, I may feel angry at my friend for failing to be punctual. This anger doesn’t change the fact that I value friendships and family. Affective states are object-less attitude changes which seem to shift what we value. For example, one can feel depressed without feeling depressed about anything in particular. When one feels this object-less depression, they tend to experience a shift in values. They may no longer value, or value as much, friends or perhaps even family (see Moller’s paper referenced in [5] for more on this). For an interesting treatment on what some possible “objects” of affective states are, see Crane, Tim (1998) Intentionality as the mark of the mental, Contemporary Issues in Philosophy of Mind, ed. Anthony O’Hear.

 

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27 replies

  1. Note from the editor: for this and the next post we will not allow comments that go into discussions of meta-ethics. That aspect has been debated, frankly, ad nauseam, during the past several weeks. So we’d rather people focus on the actual topic of these two essays, rather than going “meta.”

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  2. In my years as a pastor I observed a lot of people. Most sick or dying people appreciated their caregivers. A few did not. I have fixed feelings about the few who did not, but should have been able. The legacy they left about themselves was not good. While outwardly able, they still were unable to muster enough good will to be thankful. I suspect some sort of personality defect, and further suspect that it likely was genetic or something like post traumatic stress syndrome.

    A secondary thing is that the sick and dying vary in how much care they want, some like a lot of doting, others like to be alone. Patients who are socially skilled know how to manipulate the system so that they get no more care and doting than they want. They also tend to be thankful for whatever care they get. Again I am not sure this is a moral quality.

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  3. I have lived striving to make others feel valued, appreciated, and respected. Now that I am dying, why would I become a different person? You argue that those who would give the dying a “pass” on moral obligations are diminishing them. I think by lecturing us on our ongoing moral obligations, you underestimate us. If we have lived morally and ethically, why would we not die that way?

    In a sense, you are equating the dying with a child who follows the rules set by her parents. When she becomes ill and senses that she may be able to negotiate some “sympathy leniency”, she happily ignores her homework and her chores.

    I live morally because I choose to do so. I don’t need someone to tell me that it is still my obligation now that my life is ending.

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  4. Thanks, and this looks interesting. I taught a college class on issues in death and dying, which is part of the reason for the interest. I had several guest speakers address the class, including the director of the local hospice. Especially back in the late 1990s, but somewhat still today, I think, a lot of people aren’t aware of all that hospice can do.

    First, I agree that hospice volunteers are not paid counselors, and should not expected to be so. That said, most hospices, in larger cities, at least, have paid chaplaincy staff for people of faith, and may have paid counseling staff as well. Beyond the fact that a hospice volunteer shouldn’t be put in such a position, they have not been trained for this. Thus, beyond it being an ethical issue, which it certainly is, it’s at a minimum in an iffy area legally, if not a dark one.

    Second, the hospice is but one example, per your caveat.

    Let’s specifically list a couple more.

    You didn’t mention financial obligations. While noting the still-spiraling costs of health care in the US (and the failure of Obamacare to do as much about that as its promulgator would claim), the terminally ill have an ethical duty to address reasonable financial responsibilities. That means neither dumping such responsibilities on their heirs nor using legally dubious loopholes to try to avoid them.

    Third, on things medical, like no-resuscitation orders, or “assisted suicide” in places that allow it, the terminally ill have a moral self-duty to make clear their intentions, including involving a non-family member (not a hospice volunteer, again) as legal witness if needed, especially if that person changes his or her mind after entering the terminal state of an illness. This includes the moral self-duty, especially if the patient’s religious and/or philosophical beliefs are greatly different from the family, to resist family attempts at pressure, including family members’ inappropriate use of volunteers.

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  5. The 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.

    (Hopefully, more later.)

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  6. The compassion that shone through your post is like a lighthouse beacon. Dan-1, I congratulate you. You are a mensch.

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  7. Hi Dan, I’m a bit leery about jumping in before Aravis has had his say in the second essay, but this is an interesting topic (nice essay) so I’ll start now.

    Thankfully I can dispense with the usual stumbling block to conversation (meta-ethics) and jump to discussing the ethics involved.

    Impending death can have several effects. It can bring out the best in a person, the worst, or simply reveal who that person really is.

    So the short answer is that for patients who have a sense of moral obligation to others, most will act accordingly which makes the question moot to some degree. We don’t need to worry about proving if they have it since they already do. This was put nicely by SusanR.

    And for those who don’t have such feelings of obligation (having been revealed to be such persons), or the situation has brought out the worst in them and so they reject their own feelings (in spite or despair), what will building a proof do?

    I understand the dilemma you raised but I’m not sure if the solution is “yes, they have an obligation because X, Y, and Z.” It would seem the solution is to find answers to the questions “how can we avoid such problems?” or “what might encourage patients to want to contribute to better care/a better world while they are dying?”

    The seeds of this are found in the arguments you have made for their obligation. It is easy enough to point out that if they like the care they are given, it is only possible because (or depends upon) people treating the caregivers with respect. If that doesn’t change their behavior it is unlikely telling them they must, because they owe it to someone else, will.

    I wasn’t moved as much by the case of the patient telling someone their son was adopted. Being taken care of builds bonds with the caregiver. It is intimate. And it is possible the patient will not realize the relationship is not as personal as they feel it is and so want to share secrets. I think volunteers could be educated in this beforehand, and try to establish boundaries throughout, or learn to handle such responsibility. One can’t expect a patient to be trained (or moralized to) about such things at that stage.

    Hi SocraticGadfly, you added some interesting tweaks. What about financial obligations… of the dying? If nothing else, impending death really should (from my perspective) come with a sense of freedom from financial obligations. If it can’t then we the living have failed to build functional societies. If you mean not to rack up credit card debt on dream vacations before one is hospitalized, well… honestly… given how companies live off credit card holders preventing them from living full lives, why not?

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  8. We are all always dying — “Las du triste hôpital,” Mallarme famously compares the world to a hospital. Sometimes terminal patients behave badly, but let’s not pretend all ethical transgressions are of equal weight. Possibly pressing a general and judgmental term like ‘unethical’, which can cover such acts as murder and so forth, upon a dying man who fails to give first consideration to a nurse’s stress, is itself ethically dubious. For one thing, exceptional stress is part of the nurse’s remit. Also remember that obligation entails reciprocity, so moral lapses are contextually transformed when met with compassion or forgiveness. .. one reason, in fact, why religion attends the death bed.

    On the other hand, soon we will be able to rate and input the behavior of dying patients, and the estates of those who are inconsiderate can be charged accordingly. The thinking in this paper can be used to justify that procedure and has probably been anticipated by medical software visionaries. It seems a nightmare, but also unavoidable.

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  9. Hi Dan,

    Interesting essay and I’m sorry about your father.

    >”So the terminally ill have fewer moral obligations than we do.”

    I question whether it’s valid to quantify moral obligations as it seems the moral obligations of any moral agent can be generated infinitely. To illustrate (in a slightly silly way), any moral agent might be said to have the infinite set of moral obligations deducible from the following:

    For every natural number n, moral agent A has a moral obligation not to tell a lie with n words.

    But even if moral obligations were quantifiable, I question whether the generalization that terminal patients have fewer of them holds. Compare a healthy simple man with a dying man of affairs and extensive family.

    I think it would be better to say simply that a morally competent dying person has special moral obligations relative to a healthy person.

    >”Even though they can uphold the duties they still keep, they have reduced culpability should they fail to do so; they are swimming against a stronger emotional current than you or I.”

    This raises the question of the nature of moral obligations. Do moral obligations have a fixed nature such that a dying person is less culpable in violating them or does the condition of dying change moral obligations such that culpability is as it is with any moral obligation?

    The notion of lesser culpability seems a notion more appropriate to fixed (legal) laws, and moral obligations might not be like fixed (legal) laws.

    You referenced Kant to the effect that a moral obligation implies an ability to fulfill it. If a person’s abilities diminish, wouldn’t moral obligations likewise diminish, while the matter of culpability remains the same?

    That is, it seems there are two possible views: 1) moral obligations are fixed and culpability varies or 2) moral obligations vary with ability and culpability is fixed. It seems only the latter is consistent with Kant’s point.

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  10. Daniel Tippens,
    While I enjoy reading your essay, I do have two objections (or a challenges?). My first challenge begins with an elementary distinction between moral obligations and supererogation. A moral obligation requires that an agent acts according to duty whereas a supererogation is any moral act that is not required, but nonetheless would be morally good to perform. Given this distinction, one could ask “why aren’t the prescribed actions for patients supererogation than moral obligation?” You point out the benefits of such prescribed actions if they are followed, but these benefits alone do not make an action a moral obligation. After all, a donation to a reliable charity has potential benefit, but that doesn’t necessarily make it a moral obligation; it could just as well be a supererogation.

    My second challenge is this: couldn’t the institution’s role to compensate volunteers’ (extreme) psychological stress substitute patients’ obligation to volunteers? After all, volunteers (in some sense) are risking their mental health and investing their time to help patients. If volunteers are compensated for their mental health, they could be motivated to continue their work than quit. Something similar is being considered in the fire departments*; they are considering whether or not to compensate for volunteers who risk their lives going into burning buildings to save civilians. What prompts such consideration is that they are running low on staff, so they need ways to compensate volunteers in order to motivate them to stay. Likewise, hospice volunteers are risking their mental health to help patients, but if the number of staff members is declining due to the extreme stress, perhaps the hospice can find ways to compensate in order to motivate volunteers to continue their work. While you might think patients have an obligation to volunteers (let’s call this patient obligation), someone else might think institutions have an obligation to volunteers by compensating them (let’s call this institutional obligation).

    I’ll look forward to your reply.

    *http://www.usfa.fema.gov/pdf/efop/efo33160.pdf

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  11. I’m an active hospice volunteer.

    Basically everyone in hospice care does recognize the agency and moral responsibility of mentally competent patients, and I think the author does a good job of tracking our intuitions about diminished (but not zero) moral responsibility when facing death.

    But I’d say far and away the primary responsibility of the patient is to accept hospice in the first place. Most patients and families come to hospice far too late for it to be a significant benefit to themselves, their loved ones and the healthcare system (reducing the immense costs of frequent ICU hospitalizations and end-of-life futile interventions). People in general have a moral responsibility to think about death, write advance directives and make realistic decisions while they are well and competent.

    Patient responsibility toward the hospice volunteer? 99.9 % of that burden falls on the hospice agency rather than the patient. Programs to educate, train, support and retain volunteers make all the difference. My volunteer coordinator for 4 years was a skilled psychotherapist and teacher who was always available to discuss both patients and how I as a volunteer emotionally processed the care-giving experience. She is why I’ve lasted 4 years and not 4 days. Hospice agencies need to invest in volunteer programs and hire the right people to run them.

    Also worth mentioning is that we lose a lot of volunteers because they romanticize hospice care. A lot of it is showing up for advanced dementia patients and others with significant mental impairments. Often it’s lonely work and it’s not clear that you’re making much of a difference. The best people have a gift and a vision.

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  12. Hi everyone,

    First I want to note that I think that this comment thread contains incredibly insightful and on-point comments. I really want to thank everyone for that. I’m really deliberating hard on how to answer, and am having my intuitions tugged at in various directions now.

    Second I want to point out that part of this paper was intended to get many of us who are not yet terminal patients to start thinking about what our moral obligations will be when we get to this phase of life. If we think about these things now, we may be more likely to do what we think is right later on when the time comes. I tried to articulate this in the end of the essay with the following lines,

    “Given that we have close to a 50% chance of winding up under a palliative care program, we should ask ourselves what our moral obligations will be if we become a dying patient.”

    and

    “I hope that if and when we enter the phase of our life where we are patients at a hospice, we will try to uphold this moral duty to society.”

    Third, I really want to recommend one of the readings that I referenced in endnote [5]. The paper is by Dan Moller from UMD college park, and it discusses what changes in affective states (what things like “feelings of detachment”) do to our ethical practical decision-making process.

    SusanR,

    ” If we have lived morally and ethically, why would we not die that way?”

    I certainly didn’t intend to say that all terminal patients will change their moral attitudes upon learning of their impending death, apologies if the paper came across that way. But I do hope it is at least plausible that some, or many, of them do. I gave Oliver Sack’s quotes as just one example, where he says that he feels detached from certain issues such that he doesn’t feel they are in his hands anymore. In other words, certain issues are ones he no longer feels morally obligated to address now that he is terminally ill.

    I don’t think that this should be seen as odd or blameworthy, and I suspect that these changes in what we care about happen frequently. We experience changes in values/ what we care about all the time due to life events. For example, when we go through puberty we find ourselves caring a lot more about spending time with the opposite sex whereas we didn’t before. When one becomes pregnant they may experience a shift in what they care about. And when one becomes terminally ill, they may find that they feel detached from things like societal obligations. I think these shifts in values or things we care about happens a lot throughout our lives, and they shouldn’t all be seen as odd or blameworthy. (much/almost all of this was taken from Moller’s paper referenced in [5]).

    Socratic,

    Thanks for your thoughts, your suggestions about other responsibilities patients may have are interesting. Could you say a bit more on this since you have taught Death and Dying classes?

    Ejwinner,

    “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.”

    Could you do a bit more to make this point against the background of my response to this kind of argument presented in my paper? So you might recall I said,

    “Imagine that a patient would derive great happiness if he were allowed to insult and berate the volunteer by targeting the volunteer’s insecurities [8]. This patient insults the volunteer in various ways aggressively and with resolve. Just because it is the volunteer’s job [and the volunteer volunteered] to care for the patient, do we want to say that the patient does not have any obligation to refrain from engaging in this behavior? I would think not.

    The idea in the case of Sam and Joe is supposed to be similar, albeit to a lesser degree. Sure, Sam’s care is the job of the volunteer (Joe), but does that automatically mean that Sam doesn’t have an obligation to refrain from throwing Joe into morally problematic situations? I don’t think so.”

    I would just like to hear what your thoughts are on this before I try to respond further if that’s okay.

    Dbholmes,

    One point you made was that it seems that in the set of people who would feel detached from societal issues, would arguing that they have moral obligations really motivate them to uphold the obligations? I want to say three things about this, one of which (the second point) addresses perhaps a more broad but implicit question you had which might be “why write this paper at all?”:

    1. Please remember what I said at the beginning of this comment regarding how part (though not all) of the reason for writing this paper was to get us thinking about what we think our obligations are going to be as a terminal patient. That way, when the time comes, we may be more likely to uphold these obligations despite feelings of detachment.

    2. Another part of this paper was to get us to start treating terminal patients, at least to a degree, as moral agents also thereby upholding their dignity. I do feel that some dignity is lost when terminal patients aren’t treated as moral agents. Much of this intuition does happen to come from my experiences with my father, but other patients I have encountered want to be treated like they have moral responsibilities still (see David Howard’s comment below about how most hospice volunteers recognizes the moral agency and responsibility of terminal patients who aren’t mentally unstable). As I said, I think it contributes to a sense of normalcy and less of a feeling of alienation from others.

    3. I suspect that many times the first step to beginning to uphold moral obligations where you previously hadn’t is to intellectually agree that you have an obligation at all. If you don’t even take this first step, it is unlikely you will ever ascent to upholding the duty. I don’t necessarily mean that you simply won’t know about the moral obligation and so you won’t uphold it, it could be that you are vaguely aware of the moral obligation but you haven’t laid out a concrete argument one way or the other yet. This is the process I have undergone in many cases.

    Astro,

    “On the other hand, soon we will be able to rate and input the behavior of dying patients, and the estates of those who are inconsiderate can be charged accordingly. The thinking in this paper can be used to justify that procedure and has probably been anticipated by medical software visionaries. It seems a nightmare, but also unavoidable.”

    Can you elaborate on this?

    I am still thinking about Paul, Philonous, and David Howard’s comments and will try to reply tomorrow. Goodnight.

    Like

  13. I don’t want to be accused of be meta-ethical, but I don’t think language that implies blameworthiness and perhaps indirectly the discussion of appropriate sanctions for those who have failed in their duties but have some excuses is really the way to go. Tough love? A lot of this seems to be more social etiquette – being polite and appreciative that others are being helpful. I too have worked in care of the terminally ill, though in a professional capacity. If people are grumpy because they are in chronic pain, or just feel crappy, I don’t think carers should give in to feelings of resentment, or alternatively praise people to their faces for being such a good patient – it just applies inappropriate moral pressure. Relatives of a patient might be in more of a position to say something judgmental, and if they don’t, too bad. Maybe working through pain and distress in a nonconfrontational reflective (in the psychotherapeutic sense) way might be an option. I know you are putting forward the idea that we are respecting the patient by making such demands, but I can see it just as easily backfiring, if only because it will not always be clear what someone actually has the capacity to do. I mean, exhorting someone to offer up their suffering to God may also be useful to them on some occasions too…

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  14. Thanks Daniel Tippens for this essay. Your hospice work comes as no surprise given what you’ve done here. Hopefully you do find us thankful!

    As far as the requirement that we not go “meta” regarding ethics/morality, I actually believe that whenever a writer presents a definition for a term, that the reader is always in error for disputing it. There are no terms which have “true” definitions, and thus if we want to comprehend what someone is trying to say, this does mandate acceptance for all provided definitions — and even when we find the author’s points to be crap! Here we must still use a writer’s definitions rather than our own, and I consider the fallacy of not doing so to be quite common. (I don’t see definition substitutions exactly as “strawn man,” but if anyone knows a formal term for such fallacies, then please do bring this up!)

    While you may not have spelled out a formal definition for ethics/morality here, I think it’s clear that you were referring to an obligation regarding one’s behavior to be socially nonnegative at least. Please feel free to add or subtract from my presumption as you see fit.

    I am now, however, going to get quite provocative. Dan I find your account to be a wonderful demonstration of my own radical perspective, or that the conscious entity is naturally selfish, capitalistic, utilitarian, hedonistic, epicurean, and so on. If this were not the case, for example, then perhaps hospice volunteers would indeed be more plentiful. It would seem that we either do things because they provide us with hope (which feels good), or because they diminish our worry (which feels good as well).

    Also consider this ethics/morality social obligation itself. You seem to have presented a tool from which to help cause a naturally selfish human, to not display quite so much selfishness. Apparently we use ethics/morality in order to judge others (and ourselves), and so impart theory of mind penalties and rewards (like humiliation, respect, and so on). Such tools surely help a selfish creature function socially, though I presume that many erroneously explain things like charity work, to be demonstrations of true altruism.

    I do suspect that I know what Daniel Kaufman will bring us next time. Perhaps he will observe how much nurturing the human requires in order to become “healthy,” and so ask how we can judge the owner of “a given shoe,” when we can’t actually use them? Shall we take for granted all that we have been given to provide us with our hope, in order to look down upon those who do not display such social reverence?

    I believe that once the philosopher/scientist becomes able to separate what we are from what we would like ourselves to be, he/she will also be able to develop far more effective theory from which to help humanity.

    Like

  15. we’d rather people focus on the actual topic of these two essays, rather than going “meta.”

    Thank goodness for that. I was afraid the stress would trigger metamorphosis. Who knows what my next form might be? Would I resemble a well known meta-commentator?

    This is the first of two essays, by Dan Tippens and Dan Kaufman, about the concept of moral obligations. Kaufman’s response to Tippens will appear later this week

    I would be grateful for some clarification. The wording implies that the two authors have contrasting or competing points of view. Is this a debate? What is the question that is being debated? Is Dan-K advancing a ‘No’ position since this title begins with ‘Yes”? What will Dan-K’s title be?

    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.

    This is a compound problem:
    1. He gave an undertaking of confidentiality.
    2. He feels morally bound to share the information for the good of another.
    He suffers, as a result, from conflicting moral obligations. Which one has priority?

    This is a common class of problems. I have two observations:
    1. A promise of confidentiality is a fundamentally important moral act. Society is held together by dependable promises. It is the glue of all our social interactions.
    2. In this matter he is a bystander, not one of the primary actors and so has diminished responsibility for sharing the information. This is a matter that should be settled by the primary actors and it is wrong to assume that responsibility unless there are strong reasons..

    Weighing these two considerations I would conclude that my personal integrity was of primary importance. I cannot make and then break a promise without there being truly compelling circumstances. The competing moral obligation is of a much weaker nature.

    Finally I would observe that the need to share the information is suspect. It is a common feature of society that we tend to share information as a form of purchasing reputational credit. The more private it is the greater is the reputational credit. This need not be a conscious calculation but it is a powerful force nevertheless. It is this that lies behind gossip behaviour. The person in this case should carefully examine his true motivation for wanting to share the information.

    Part of my earliest moral training was the stark injunction – a promise is a promise and can never be broken.

    Liked by 2 people

  16. PLEASE USE THIS VERSION, WITH COMPLETED LAST SENTENCE TO DB; TRASH FIRST VERSION OF THIS COMMENT

    Responding to a few people:

    DB Credit card companies will go after the heirs for unpaid bills. And, they’ll be a primary creditor, not a secondary one. Beyond that in particular, in general, they’re not going to make the 1 percent suffer anything extra over my dying dad going to Cancun. So, it’s a nice idea, but the reality is that you’re racking up trouble for your heirs. If you pass on any money to them, and debts, creditors will chase it.

    Dan Thanks for the “invite” to talk further. Part of the class was getting people more comfortable with death. We did a field trip to a funeral home, one that had a child casket on display, even. We talked about medical issues such as how you define death, and near-death experiences. (I told the class in advance I was a secularist and naturalist.) Per the likes of Mitford and others, we talked about the evolution of the modern burial, funeral and funeral home from the US Civil War onward, in the US. Aided by a PBS series that was airing at that time, we looked at death, dying and burial customs in non-Western societies.

    As for responsibilities? As noted in my first comment, we talked about making advance care directives, such as do not resuscitate ones, AND to make sure one’s relatives knew about this. Medical alert bracelets with directives were also mentioned. So was a general durable power of attorney, and a specific medical durable power of attorney.

    Those are all responsibilities before one actually becomes terminally ill, in many cases, but they’re responsibilities to self, to make sure one gets treated the way one wants, and to relatives, to stop fights over this. How often do we see news stories, speaking of medical durable power of attorney, of kids fighting over whether or not to keep dad or mom on “the machines”? Proper medical durable power of attorney addresses that. General power of attorney addresses paying for bills, and other legal arrangements, and again is not only for one’s self, but to stop fighting among kids, or other heirs.

    Although I’m not a virtue ethicist per se, this ties somewhat to that school of ethics — even if not a “good” death, dying as well as reasonably possible. And, if you know you’ve done your best to make your wishes known, and for your family to honor them, you’re dying well for them to best handle your dying.

    I’m with you otherwise. Let’s get the heirs to stop pretending that a dying person is a bump on a log. They’re still a person. Assuming of reasonably unimpaired will, per this essay, treat them like that, if you are an heir. And, while you focus on the responsibilities of the dying, the heirs have responsibilities, too. If you know that dad wanted “no heroic measures,” then stop doing them! We talked a bit about that.

    Labnut Good observation on sharing of confidences as a “coin in trade.”

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  17. dantip,

    My first comment stated the general principle, put somewhat abstractly, derived largely from what I was taught in nursing school, and from experience.

    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? And in instances of health crises, any personality could change radically – usually the response was 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.

    Liked by 3 people

  18. Hi Paul Paolini,

    “I think it would be better to say simply that a morally competent dying person has special moral obligations relative to a healthy person.”

    I am open to this point. We could also just say that terminal patients have some of the same, and some different moral obligations as relatively healthy people.

    “That is, it seems there are two possible views: 1) moral obligations are fixed and culpability varies or 2) moral obligations vary with ability and culpability is fixed. It seems only the latter is consistent with Kant’s point.”

    Whether or not you are right is going to depend heavily on what we mean when we say “someone has the *ability* to perform some action.” To put this in terms people typically consider, whether or not you are right will depend on what we mean by “can” when we can “ought implies can.”

    Since the debates surrounding what “can” means is pretty extensive, I can really only tell you where I am coming from in this paper.

    I follow in line with two thinkers on this subject (who actually operate more at the intersection of law and philosophy): Hart and Moore. Hart did much of the groundwork on this, and Moore did extensive elaboration.

    Hart drew the distinction between two different types of failures. One is a failure due to *incapatication* and the other is a failure due to a *lack of fair opportunity*. A failure of incapaitation is when one lacks the fails to do something because they lack the capacity to do that thing. An intuitive example would be where one has been struck hard in the head, and so they completely lose the capacity to deliberate before acting.

    Now there are two different types of “capacities” we should note here. There are what are known as “general capacities” and “particular capacities.” A general capacity would be something like, “I can run 5 miles.” Here, I am saying that I have the ability to perform a general class of actions. A particular capacity, by contrast, would be something like, “I could have run the 5 miles in the race yesterday.” Here, one is pointing out that they could have done something on a particular occasion. Having a particular capacity implies having a general capacity, but having a general capacity doesn’t imply having a particular capacity.

    A failure of opportunity would be a case where somebody has their general capacities available to them, but they don’t have a fair opportunity to exercise particular capacities. For example (and I brought this up in endnote [10]), consider somebody who comes home to find his wife cheating on him. He enters a state of emotional turmoil. He then proceeds to beat up both his wife and her lover. In this case, we might want to say that since the man was in emotional turmoil, he lacked a fair opportunity to exercise his particular capacity for self-control in this case. Unlike the rest of us, he had to put in much more effort to be able to refrain from beating his wife than in most normal situations. So, even though we will say that he had the general capacity to refrain from beating his wife and her lover, he had an unfair opportunity to uphold his particular capacity on this occasion compared to the rest of us.

    This “lack of fair opportunity” idea is one thing that can generate an excuse (removal of culpability without removal of obligation), and indeed our laws reflect this. Crimes of passion (such as the man beating his wife and her lover after seeing them in bed together) are based on the idea that one can have a moral obligation to do something (refrain from beating one’s wife) and *can* (general) uphold the obligation, but the agent’s “passions” can cause an unfair opportunity to uphold (particular) the obligation.

    So for terminal patients, I was thinking that since they still have their general capacities to uphold certain duties (they can refrain from putting people into morally problematic situations, they can say thank you), they have an unfair opportunity when it comes to exercising those capacities in most cases given their emotional troubles, thereby generating an excuse.

    Note that on this interpretation of the ought implies can principle, it is the lack of a general capacity that is underpinning what we mean when we say, “I could not do x.” So as mentioned in the paper, a locked-in syndrome patient lacks not only the particular capacity to help his sick daughter, but he lacks the *general* capacity to help his sick daughter. In this sense, he can’t help her. In the case of terminal patients, they have the general capacities, but have unfair opportunity to exercise particular capacities. So, while they can (general) uphold their moral obligations, they have an excuse should they fail because they have a lack of fair opportunity to uphold their obligations (unfair opportunity to exercise their particular capacity).

    So this is just to let you know where I am coming from. as I think that is the best I *can* (pun intended) do on this forum.

    Philonous,

    I am very sympathetic to the concern you raised regarding supererogation. First, though, I want to draw your attention to the fact that I did flag the concern of supererogation in my paper. Please see endnote [9]. However in that endnote I simply, as I said, *flagged* the concern, but I didn’t actually *address* it. Also, I want to admit that I am not a radical consequentialist who thinks there are no such things as supererogatory acts (unlike perhaps, Singer).

    It is important to note that whether or not something intuitively counts as supererogatory typically depends upon the degree of cost to the agent. If there is no cost to the agent and the agent perform an action that is morally good, it seems odd to call it supererogatory (since it would be a morally good action, but not morally *praiseworthy* which is what many people think matters for supererogation). One example would be of a millionaire who passes by a homeless person. The millionaire happens to have a $20 bill in his hand, and so he tosses it to the homeless person. The cost to the millionaire was virtually non-existent, so it would be odd to call this a case of supererogation.

    On the other end of the spectrum, if one performs an action which is extremely costly to them, it is clearly a case of supererogation. Consider a very poor person, Jack, who only has $30. Jack walks by a homeless person who has nothing, and gives the homeless person $20. This was extremely costly to Jack, and so we would probably want to commend Jack for this behavior. We would deem his action morally praiseworthy since he arguably had no duty to give up $20 given the cost to himself, but he did it anyway.

    Whether or not you think that terminal patients are in a supererogatory vs. moral obligation relationship to societal actions will depend on how much cost to the terminal patient you think is incurred by upholding the specific societal obligation in question. This is probably worth a whole other essay, and I am still uncertain about it. I did think that things like saying “thank you” and preventing morally problematic situations are generally not terribly costly to the terminal patient. Note that I said *generally* and I didn’t say always.

    David Howard,

    Thank you so much for your comment. I am very pleased to see another hospice volunteer chime in.
    I am going to comment on what you said later tonight if that is alright.

    Like

  19. Dan: Condolences about your loss, and the suffering you experienced from it.

    At the risk of going meta, and drawing terminality from the formidable metacommentator, I would point out this: to be in society is to have moral obligations, and supererogations are best. However, when we are terminal, brains break down, thus so should the expectations of others.

    The terminally ill have moral obligations, indeed, but those in attendance have the meta obligation to consider said terminality to mitigate moral expectations. As I am sure you know all too well.

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  20. Is Dan Kaufman really going to argue that terminal patients have no moral responsibility? I’m wondering if we will get any real disagreement.

    It’s interesting that as I get older I tend to be more detached as well. I like to listen to international news but I don’t get into politics as much as I used to. I also notice similar changes in older relatives. I think those who don’t detach (to some extent) often get grumpy. I even told some people they should stop watching the news (especially those shows that tend to push buttons.)

    But I suppose for those with terminal illness the detachment might not just be from societal goals but personal goals – if they could not be attained. It may be that the realization that they will not meet their personal goals overshadows the societal goals.

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  21. Hi Joe,

    Keep in mind that I was arguing that *societal* obligations are still present for terminal patients, I left aside all other moral obligations that obviously are still present for terminal patients.

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  22. Hi Dan, I did not intend to question why you’d “write the essay at all”, otherwise I wouldn’t have said it was an interesting topic, a nice essay, and that I understood the dilemma you raised. ☺

    The first two concerns listed in your reply to me were clear enough in the essay and generating thought (on both sides of caretaking) certainly makes sense. It is the third concern I would only agree with in part, and is where an implicit question might be found in my original reply: “why take the particular approach you did in the essay to generate or restore a sense of obligation?”

    You specifically used the term “duty” and that (to me) comes from some position one has agreed to take on. ejwinner did a nice job detailing this concept and how it does not apply to someone who is dying (particularly just because they are dying).

    Your response to ej (and original essay) suggest that the patient has a duty, given that it would be absurd to expect a caregiver to accept unrelenting abuse. I’m wondering if that really represents a “duty of the patient”, or rather the limits of the “duty of the caregiver” which the patient must keep in mind or risk losing care. The only way I can see this being turned into a duty for the patient (and this could be argued) is if a hospice or caretaker make clear up front that a person must be willing to take on certain duties to become a patient under their care.

    Regarding obligation, to me it is more important to understand what values underlie feelings of obligation and so can be appealed to (whether for patients or caregivers). Give them the pieces that attract their natural concerns (such as a sense of reciprocity, avoidance of cruelty, etc), and not the rules which say they “should” be concerned.

    Just so you know I am going to be pretty busy for the rest of the week so likely won’t be able to reply until the second essay is out. I’ll be interested in reading your responses to others when I get a chance.

    Hi socraticgadfly, I thought the idea of debt being passed to anyone else just because they are related went out with indentured servitude. Oh right, we’ve reinvented that as well. Well this goes to the point that it is not a specific duty of the dying to play by the rules of a bad system, but a duty of the living to fix it.

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  23. Dantip, you ask me to elaborate on this:

    “On the other hand, soon we will be able to rate and input the behavior of dying patients, and the estates of those who are inconsiderate can be charged accordingly. The thinking in this paper can be used to justify that procedure and has probably been anticipated by medical software visionaries. It seems a nightmare, but also unavoidable.”

    I was responding maybe to implications of your remark:

    “Here I wish to focus on one duty in particular, but the way I defend it can be applied, mutatis mutandis, to other societal obligations as well.”

    You write:

    “I think a terminal patient has a moral obligation to prevent psychological trauma for volunteers.”

    Do people agree? I think that dying is traumatic, being around dying is traumatic and the whole scene of death is acutely riven with conflicting moral consideration, emotional, professional, institutional, legal, familial etc. Wounds are opened around the dying which take years to heal. It’s a battleground with different moral rules.

    It’s great to draw attention to the experience of the hospice volunteer, and the hospice network in general. The subject of death doesn’t come up much on SciSal.

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  24. There is a new moral obligation that I have assumed since I have become ill. It was not really mentioned yet. I feel I should demonstrate to others the truth that there is enjoyment to be found and moments of joy, even when one is in pain and dying. I try to do this by being friendly and wisecracking and laughing and being kind. It makes my life much better, and I think, if you will forgive the hubris, it sets a good example.

    I find myself to be a much more sincerely grateful person now that my life has imploded. I notice and appreciate a hundred things every day. Maybe it is because your world gets small when you’re sick. Or maybe when the world is dark, every little light stands out. But isn’t there a moral obligation to communicate this interesting discovery about life. “Hey, guess what I just figured out! You can still have fun when things are rough. Maybe try to do that!”

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  25. Hi David Howard,

    “But I’d say far and away the primary responsibility of the patient is to accept hospice in the first place. Most patients and families come to hospice far too late for it to be a significant benefit to themselves, their loved ones and the healthcare system (reducing the immense costs of frequent ICU hospitalizations and end-of-life futile interventions). People in general have a moral responsibility to think about death, write advance directives and make realistic decisions while they are well and competent.”

    I would agree with this. Thank you for pointing it out.

    “Patient responsibility toward the hospice volunteer? 99.9 % of that burden falls on the hospice agency rather than the patient. Programs to educate, train, support and retain volunteers make all the difference. My volunteer coordinator for 4 years was a skilled psychotherapist and teacher who was always available to discuss both patients and how I as a volunteer emotionally processed the care-giving experience. She is why I’ve lasted 4 years and not 4 days. Hospice agencies need to invest in volunteer programs and hire the right people to run them.”

    I do agree with you that much responsibility falls onto the hospice systems who are managing the volunteers. As I mentioned in the essay, this option should be pursued further. However, I was thinking this doesn’t remove the obligations of patients to assist, and for the following reason. Many hospice systems simply are not as good as the one you have been involved in. This is a widespread problem, too. This lack of care for volunteers can also be measured by the paucity of research done on them. In one review paper I read, it indicated that there were a total of 56 papers total on hospice volunteers once you filter out the irrelevant, but seemingly related, papers.

    Since there is the practical problem, you might think that until it gets solved on the hospice system’s end, there is an obigation on the patient’s end to also contribute to solving the problem. This would be similar to how we still feel we have an obligation not to eat beef (which comes from cows that release large amounts of methane gas) despite the fact that other people are working on solving the problem of global warming. There is a reciprocal obligation.

    I’d be interested to hear what you have to say.

    “Also worth mentioning is that we lose a lot of volunteers because they romanticize hospice care. A lot of it is showing up for advanced dementia patients and others with significant mental impairments. Often it’s lonely work and it’s not clear that you’re making much of a difference. The best people have a gift and a vision.”

    Agreed. Thanks for bringing this up. However I tended to find this lonely work happened more in the ICU than it did in-home visitations. I may have had a different experience though.

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  26. Hi SusanR,

    It’s very nice to hear your two positive comments above about the pleasures that you find as your end approaches, and how you wouldn’t presume to have permission to be uncivil simply because you’re dying. Unfortunately however, we’re being told that your outlook happens to be the exception. One of the reasons Daniel Tippens stated he wrote this, was so that we here might prepare ourselves for hospice care (and thus I presume display your positive attitude). My thought is “If only it were so simple!” Sure if my health were to go down I believe that I’d be thankful to those helping me, and most certainly volunteers. But I can also imagine what would happen if I were severely injured emotionally as well. Here I might say, “Go to hell young master Tippens and your moral judgementation! You simply do not comprehend my pain!”

    I don’t understand what it is that makes so many people in hospice care so bitter, though I have heard that there’s kind of an “institutionalized” phenomenon that occurs. In the end I’d say that what these people need is hope, and so cost effective ways to provide this should be sought. Either way, honesty about the nature of this predicament will surely be required.

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  27. Hello, Philosopher Eric. New hypothesis: most people who are, by nature or by choice, civil, will continue to be so under hospice care. People who choose to indulge their inner grumpy will soon observe that medical staff and hospice volunteers respond better to the other patients who are more polite. Let’s say 80 percent of the “inner grumps” will learn to control their behavior to get the desired outcome of sincere, warm, friendly care.

    So perhaps those badly behaved individuals are so, as you put it, emotionally damaged, that they DO deserve a “pass” on their “immoral” rude behavior. Not only are they tossing aside societal rules about manners, they are acting against their own self interest by biting the hand that feeds them. (As I do when I loose my temper with the cable company rep and get left on hold for 45 minutes. Sigh)

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