Yes, terminal patients still have moral obligations

by 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.

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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.