Patients’ Rights Survey

Patients’ Rights Survey

Please take my patients’ rights survey. I am trying to learn about how patients (and potential patients: everyone) feel about informed consent, financial disclosure, medical research, and end-of-life decisions. There are only 20 questions and it is anonymous.

I will be most appreciative of all responses.

We are the 85 percent

Over the years, I have had several people in healthcare tell me that about 85 percent of patients in doctor’s waiting rooms have no medical problem that won’t take care of itself with a little time and patience, but patients have been trained to demand treatment for every ache and pain. I’m sure this made-up statistic does not appear in print or as part of any official statement, but there is a feeling that mildly sick people are a drain on a system that is already overloaded.

 It isn’t a small concern, and doctors are not entirely to blame. Patients do sometimes demand treatments that are counterproductive, which has led to the excessive overuse of antibiotics, for example. Of course, patient perception is that doctors prescribed the antibiotics, leading them to believe they are effective for mild earaches and colds. Doctors say they feel pressure from patients to “do something” about their mild condition. Patients and doctors both feel they are doing what the other is directing them to do. I would guess that about 85 percent of doctors and patients feel this way, if I were to start making up statistics.

 The result is that patients can become pushy and demanding or that doctors can become resentful of needy patients. And both conditions arise, I think, from a misunderstanding of the wishes of the other. I honestly don’t think either side wants to waste time or money on useless treatments. So, “communication is the key” to a better doctor-patient relationship, or so the shibboleth goes.

 But it is more complicated that that, of course. When I was quite a bit younger, a member of my family began having fairly vague complaints and discomfort that prompted her to see her doctor. She was overweight. She smoked. She rarely got exercise at all. The doctor told her to lose weight, stop smoking, and check back in a few months. Each time she went to the doctor, she received the same advice, even if the wording changed a little, but her symptoms became more pronounced and harder to ignore.

 Finally, the doctor ordered a biopsy, which was positive for colon cancer. She was then referred to an oncologist. On their first meeting, he said, “I wish you had come to me sooner before it had spread.” Perhaps he didn’t mean to blame her for her cancer or for her lack of treatment, but that is certainly how she heard it.  Too many of us who have experience with cancer in our families have heard, “I wish you would have come sooner,” even when the patient has been seeing a doctor regularly for months or years.

 So, patients are in a bind. If we go to the doctor at the first sign of a problem, we may be seen as hypochondriacs or as clingy whiners. If we wait till the symptoms manifest themselves more boldly, we may be blamed for neglecting our own health and causing our own deaths. Given this choice, most of us would rather be seen as frivolous. We say things like, “I’m sure it is nothing, but I watched my loved one suffer, and I won’t make the same mistake.”

 This is why healthcare providers need to show a little understanding. With the possible exception of a few individuals with some rare psychological conditions, people don’t go to the doctor for the fun of it. They trust their doctors to tell them whether their symptoms are serious enough to warrant further attention, and they aren’t looking to waste time, money, or resources. To be on the safe side, I try to tell my doctors that I only want treatments that are both necessary and effective. This takes, I hope, the burden off the doctor to “do something, anything” for me.

 

Genetic testing, the Affordable Care Act, Ethics and You

In Slate, science writer Virginia Hughes published an essay decrying what she sees as superfluous or even harmful discussions around the ethics of genetic testing. She says, rightly, that some ethicists are discussing the wisdom of closing the door on testing after the “personal genomics horse has bolted.” It is true that genetic testing is here and will not go away, but we certainly haven’t worked through all the challenges posed by testing, information-management, and client care.

One of the major ethical challenges of testing, I hope, is being helped by passage of the Affordable Care Act. Starting in 2014, patients with preexisting conditions in the US will be able to purchase health care insurance through affordable insurance exchanges. Currently, though, one fear of testing is that it would reveal preexisting conditions that would otherwise be invisible and make it impossible for some people to get insurance coverage even while healthy.

Hughes hardly mentions that particular reason for the concerns related to testing.  She says in one sentence, “Would adding this data to someone’s medical record affect health insurance rates?” After raising this question, she neither answers it nor discusses it. I would think the ability to buy and afford health insurance is one of the major concerns for patients who consider the risk of exposing genetic determinants of future diseases. Medical testing is assumed to be confidential, but patient records are, of course, shared with insurance companies.

Another concern for people considering genetic testing is that the information revealed by the tests may lead to discrimination in employment. Without legal protections in place to ensure that employees are protected in the event a genetic test reveals a likelihood of future illness or disability, concerns about having the information available are quite rational.

Setting aside concerns about insurance and employment, which are monumental, Hughes addresses the issue of how information may harm patients. She is of the mind that full disclosure is always the best policy for health-care providers. The question of when it is appropriate to withhold health information from patients seemed to arise as soon as anyone began providing health care. The question has been around so long, of course, because it is both extremely important and because different patients express extremely divergent preferences. While some want full disclosure, others would prefer to be left to enjoy their lives ignorant of impending doom.

The most confusing part of Hughes’ essay is when she states, “While wasting time debating ethical dilemmas, the medical community has neglected to talk about more pressing logistical problems: 1) How to ask people ahead of time what, precisely, they want to know (and don’t want to know); and 2) How to improve the medical system so doctors can follow through on those wishes.” The two “logistical problems” she identifies are exactly the kinds of concerns expressed by the “ethical dilemmas” noted by ethicists. Yes, what is the best way for doctors to give patients exactly the kind of information they want without revealing unwanted information? These are the ethical dilemmas ethicists are wasting time debating.

Glenn Beck is shocked by bioethics blog about an article saying killing isn’t really wrong.

By now, commentary on Glenn Beck seems superfluous—his views are so patently divorced from reality, but this topic could use some discussion anyway. In this clip, he responds to a blog titled “Is it morally wrong to take a life? Not really, say bioethicists” by Michael Cook. Beck seems unaware that his comments are actually about an article titled “What Makes Killing Wrong?” by Walter Sinnott-Armstrong and Franklin G. Miller in the Journal of Medical Ethics. Cook, of course, is just commenting on the original article. Although the full article by Sinnott-Armstrong and Miller is available online, Beck obviously did not take the time to read it. Or, if he read it, he certainly does not want his listeners to.

Here’s the problem: Hospital Ethics Committees (or other hospital entities) must develop extremely precise procedures for organ harvesting. They do this because they do not believe it is ethical to kill patients for their organs, nor do they want others to believe, rightly or wrongly, that they kill patients for their organs. Sometimes, when someone is dying from an extreme and irreversible injury (such as a gunshot wound to the head), doctors will begin to remove organs only to have a monitor show a heartbeat or two. This event can be disconcerting.

I can see three alternatives here: 1. Turn off the monitors and declare the patient dead (changing the definition of death, if necessary). 2. Wait till there is no chance the heart may beat again and risk losing organs that could save another life. 3. Declare that the patient is alive but that killing the patient is acceptable.

Most ethicists have tended to suggest some variation of the first two options, but Sinnott-Armstrong and Miller think it is more honest to accept the third. If the heart may still beat, they argue that the patient is not dead but that it is morally permissible to kill that patient. The authors also make it more challenging by imagining a patient in this state for an extended time (on a ventilator or other artificial life support).

Unfortunately, their term for a patient in this state is “universally and totally disabled,” meaning that the patient cannot suffer, feel, think, or have any other function associated with being a living human being. Beck seizes on the term “disabled” and suggests they want to kill all the disabled people in the world. Is Beck being dishonest or did he just miss the point? Does it matter to you?

The final issue for Beck is that the authors said mere life is not sacred or we would not be able to pull weeds without violating the sanctity of life. So, Beck and his followers are incensed that they authors compared human life to weeds. But, of course, they did not.

No, Sinnott-Armstrong and Miller went on to distinguish between the sanctity of “life” and of “human life.” They follow the weed comment with this explanation:

 “Of course, what people mean when they say ‘Don’t kill’ is ‘Don’t kill humans’ (or maybe ‘Don’t kill sentient animals’). But why then are humans (or sentient animals) singled out for moral protection? The natural answer is that humans (and sentient animals) have greater abilities than plants, and those abilities give human lives more value. Humans can think and make decisions as well as feel (an ability that they share with sentient animals). But if these abilities are what make it immoral to kill humans (but not weeds), then what really matters is the loss of ability when humans (but not weeds) are killed. And then the view that human life is sacred does not conflict with—and might even depend on—the view that what makes life sacred (if it is) is ability, so the basic moral rule is not ‘Don’t kill’ but is instead ‘Don’t disable’.”

To be sure, the article in the Journal of Medical Ethics is provocative, and articles in ethics journals should be provocative. Many bioethicists, doctors, and lay people will disagree that killing is ever acceptable. Discussion of this issue is needed and welcome. Distortions, flag waving, and hysteria are not.

My question for Ron Paul: Autonomy and health care

Earlier this year at the Tea Party debate, Wolf Blitzer asked Ron Paul if a person who chose not to buy health care should be left to die. Paul responded that this person’s friends and community could support him and pay his bills. Many in the audience seemed to be all right with letting this person die.

Conservatives and libertarians both express a strong commitment to autonomy, which they sometimes refer to as freedom. The new health care law is unacceptable they say, because it requires individuals to purchase insurance. People should not be required to purchase insurance, but they should be responsible for the consequences if they do not have insurance. Of course, this scenario is rarely a problem for anyone, and Blitzer asked the wrong question.

I would want to ask a different question. I want to know about the person who has worked all her life and been successful. After 20 or 30 years, she decides to expand her opportunities by starting her own business. Remarkably, her business is profitable in its first year. She can afford to buy insurance, but she cannot buy adequate coverage because she has preexisting conditions that every major insurance carrier refuses to cover. When she contracts a serious illness, she is driven into bankruptcy because of medical bills that are astronomical but quite common. Should our country let her die? Should she be permitted to slide into bankruptcy?

Autonomy is not quite as simple a question as it apparently seems to Republicans and libertarians. Philosopher Isaiah Berlin described two types of liberty: one is negative and the other is positive. For conservatives, it is imperative that individuals not be forced to do something they may not want to do and no government intrusion is acceptable. This is negative liberty. For liberals, such liberty is meaningless if one is unable to make the choices he or she desires, which is positive liberty.

Describing the liberal view of positive liberty, Berlin says,

“It is true that to offer political rights, or safeguards, against intervention by the state, to men who are half-naked, illiterate, underfed, and diseased is to mock their condition; they need medical help or education before they can understand, or make use of, an increase in their freedom. ”

While conservatives will not force someone to purchase insurance, liberals want to ensure that everyone has the option to have health care. Everyone who needs health care and cannot obtain it becomes a liberal in an instant.

The number of uninsured in the United States is said to be around 50 million, but many more than that have inadequate insurance. Unfortunately, most people do not realize they are underinsured until it is too late. Many people only learn that their treatment will not be covered by insurance after they have received the treatment. What kind of autonomy is this? What is the value of liberty if it leaves one with no options to avoid bankruptcy, untreated illness, and death? Is this really what we want to be?

Can philosophy matter?

In the last century, it seemed philosophy might disappear from public consciousness. Much of philosophy had become so technical and so removed from the problems of daily life that most people who were not professional philosophers could not even name a living and working philosophers. Philosophers hardly have the recognition of other public figures even now, but they are addressing concerns that are public–medical ethics, corporate ethics, how to live a good life, and so on.



In Stephen Toulmin’s book, Cosmopolis, he describes various aspects of modernism, and concludes that it is no accident that philosophers are beginning to take seriously concerns that Descartes thought had no depth. After centuries of theoretical and technical exploration, philosophers are returning to discussions of how to live and how to make life better for others. Toulmin says it is no accident that “more and more philosophers are now being drawn into debates about environmental policy or medical ethics, judicial practice or nuclear politics.”[1] He says some philosophers may fear being drawn away from the technical questions of academic philosophy, but he argues, “These practical debates are, by now, not ‘applied’ philosophy but philosophy itself.”[2] The problems facing the world now are not new. Wars, pollution, and poverty have been with us for centuries. But these same problems are acute, chronic, and critical. It is easy to despair at our lack of progress, but Martha Nussbaum reminds us that progress has been made. In Frontiers of Justice, she says, “Racial hatred and disgust, and even misogynistic hatred and disgust, have certainly diminished in our public culture, through attention to the upbringing of children and their early education. The careful attention to language and imagery that some pejoratively call ‘political correctness’ has an important public purpose, enabling children to see one another as individuals and not as members of stigmatized groups.”[3] As humanists, we cannot solve the world’s problems, but we can choose to contribute to moral progress and promote a common understanding and care for one another, regardless of how many people join us along the way.



[1] <!–[if supportFields]> ADDIN ZOTERO_ITEM {"citationItems":[{"uri":["http://zotero.org/users/141815/items/3W4MJ9MI"]}]} <![endif]–>Stephen Edelston Toulmin, Cosmopolis: The Hidden Agenda of Modernity, University of Chicago Press ed. (Chicago, IL: University of Chicago Press, 1992), 190.<!–[if supportFields]><![endif]–>

[2] Ibid.

[3] <!–[if supportFields]> ADDIN ZOTERO_ITEM {"citationItems":[{"uri":["http://zotero.org/users/141815/items/2R3RZAXP"]}]} <![endif]–>Martha Craven Nussbaum, Frontiers of Justice: Disability, Nationality, Species Membership (Cambridge, MA: The Belknap Press, 2006), 413.<!–[if supportFields]><![endif]–>

The Ethics of Medication

Yesterday, I went to the doctor, and he prescribed medication for reflux disease. When I went to pick up my prescription, the cashier told me the pharmacy could not fill it until they received authorization from the doctor. I asked whether the doctor’s prescription was not authorization. It turns out, according to the pharmacist, that the insurance company will not pay for the medication without a written justification from the doctor.

Rather than needing doctor’s authorization, the insurance company was rejecting his authorization. So, I get no treatment for my reflux, which hardly seems fair, but the situation is exasperatingly complicated.

It could be that my doctor, under the influence of pharmaceutical reps, prescribed an expensive medication that is no more effective than cheaper alternatives. If so, it may be in the best interest of everyone, except the doctor and pharmaceutical company, to reject payment for an expensive medication that offers no additional benefits over other medications. Praise to the insurance company for holding the line on costs.

It may be that the doctor knows that the new and expensive medication is more effective and has fewer side effects than alternatives. He may have prescribed what he feels will promote my health and healing better than any other treatment available. In this case, all thanks go to my doctor, and the insurance company is really quite evil.

Or, it could be that the insurance company rejects any expensive treatment with the hope that patients will give up and find cheaper treatments or go without treatment. This, of course, might save money in the short run, although rejecting claims costs money in itself. Sometimes, rejecting a claim is more costly than simply paying it. the amount of staff time and resources tied up on this one prescription is enough to give one pause. The pharmacy says the insurance company won’t pay for the prescription, but I did not press them on how they know this. It is possible they simply consulted a list of preferred medications. It may be that they checked a computer database. Or, they may have actually made a phone call. Any of these options require employee time.

After determining that the drug was not a “preferred” drug, the pharmacy faxed a form to my doctor. If things go as planned, a member of the doctor’s staff will obtain a statement and signature from him before completing the form and faxing it back to the pharmacy. This is an inefficient system at best.

In this case, the patient, me, is going without treatment for reflux, which is causing real problems and can lead, if untreated, to serious problems such as esophageal cancer, which frequently terminates in death. So, who is to blame for the suffering of the patient? Greedy pharmaceutical companies? Doctors under the influence of greedy pharmaceutical companies? Greedy private insurance companies? Or pharmacists who raise problems when there is no problem? I really don’t know the answer.

Is health care better when you pay more?

In a New York Times article today, Reed Abelson makes the bold statement that a new hospital study provides “stark evidence” that higher payments do not translate to better medical care. He is citing a Pennsylvania government study of the 60 hospitals in Pennsylvania that perform heart bypass surgery. Two of the highest paid hospitals also had the highest death rates. This could be for many reasons. These hospitals might take the most difficult cases or the most costly. Either example would cause higher costs and poorer results.

So, the study is too narrow to make sweeping generalizations about health care costs, but it does raise some questions. Noting that this particular study does not prove much, Abelson goes on to say, “Still, the Pennsylvania findings support a growing national consensus that as consumers, insurers and employers pay more for care, they are not necessarily getting better care. Expensive medicine may, in fact, be poor medicine.”

Implied in the article is a call to adopt a pay-for-performance model for health care. The idea is that physicians and hospitals with better outcomes would receive higher pay. On the surface, this seems like a good idea, but there are potential problems. One way to improve outcomes is to deny service to high-risk patients. Abelson’s article notes that Geisinger Health Care is offering a 30-day warranty on its cardiac surgery. Private hospitals are able to choose the best candidates for surgery and have a much better chance of making good on the warranty.

Public hospitals face other dilemmas. Hahnemann University Hospital now says that its record keeping probably did not give an accurate picture of how sick its patients were before coming for surgery. Public hospitals and teaching hospitals take all patients and do their best to save them. Those with the sickest patients are likely to have the worst outcomes. This is not proof of poor care.

The question of how to compare care at different facilities or among different doctors is not one easily answered. Most will agree that better performance should be rewarded, but getting an accurate picture of care quality will require more than counting deaths and dollars. Dr. Richard Snyder of Independence Blue Cross, is quoted as saying, “Philosophically, you’re not going to get an argument from us. We believe we should pay more for high quality than poor quality.” Implicit in his statement is frustration over how to measure quality. Recognizing the complexity of the question is the first step to formulating possible answers.

Becoming familiar with death

Death be a Stranger No More

Although every human is ultimately successful at achieving death, most of us experience profound anxiety over the event. When pressed, some of us will claim that we do not fear death as much as the process of dying, but philosopher Thomas Nagel points out that the worst thing about dying is that it is followed by death (3). Simone de Beauvoir adds lucidity to the human experience, adding, “All men must die; but for every man his death is an accident and, even if he knows it and consents to it, an unjustifiable violation” (526). Of course, we can give many philosophical and spiritual reasons for fearing death and dying, but our lack of familiarity with the process must play a crucial role in our anxiety. Philippe Aries points out, “any discourse on the subject of death becomes confused and expresses one of the many forms of pervasive anxiety” (Reversal 134). He claims that we moderns have moved death in to the shadows out of fear, but we’ve only intensified the anxiety. Eliminating the fear of death and dying is not an option for humans, but it is possible to stop denying the existence of death and to face death head on and in close proximity.

Albert Camus describes the desire to control one’s own death in The Happy Death. The protagonist, Mersault, wants to be conscious when he dies to experience the last part of life and to have some will in his death. He faces death in paradoxes: “Conscious yet alienated, devoured by passion yet disinterested, Mersault realized that his life and his fate were completed here and that henceforth all his efforts would be to submit to this happiness and to confront its terrible truth” (140). This may not be the kind of happy death most of us would imagine, but it has features that seem common to what most people want, the desire to manage dying with dignity and autonomy. A change in how and where people die could help more people experience their own version of a happy death. In fact, I assert that a hands-on approach to the dying and recently dead would offer many benefits for both the dying and their caregivers.

Confronting one’s own death gives one a clearer sense of identity and purpose. It is cliché to say that we should live every day as if it is our last, but planning for our final days focuses our attention on who we want to be and how we want to be remembered. A constant recognition of the certainty of death is now seen as morbid and even psychologically harmful, but the person who is prepared to die is not rejecting life. Rather, such a person is likely enhancing an appreciation for life and experiencing a deeper connection with family, friends, and other loved ones.

In “Dying in a Technological Society,” Eric J. Cassell argues that death in the past was primarily a moral matter. When one was clearly about to die, the task at hand was to care for spiritual matters. He says that death is now a technical matter of rescuing patients from the hands of death. Death has become a technological event, he says, in part because “death has moved from the home into institutions—hospitals, medical centers, chronic care facilities and nursing homes” (43). He notes also that the nature of death has changed as a result of changes to family structure. Notably, the desire of the elderly to live independent lives is part of the reason for death moving from the moral to the technological realm. This creates quite a quandary. Cassell says, “To die amidst his family he must return to them—reenter the structure in order to leave it. Reenter in denial of all the reasons he gave himself and his children for their separation, reasons equally important to them in their pursuit of privacy and individual striving and in their inherent denial of aging, death and fate” (44). On his view, the free choices of older individuals have denied them of the care they desire at the end of life. Death must now be removed from the technical sphere and regained in the sphere of morality and family.

The first step to realizing the best deaths possible for patients is to recognize that dying is a natural process that does not require medical intervention. Of course, those who are dying may have medical needs such as pain management or comfort care, but in this respect they are no different from the living as we all need pain management and comfort from time to time. To change how we die, death must not be seen by medical professionals as the dark enemy to be kept at bay for as long as possible but as the final visitor we must all meet at the end of life. By permitting families and friends participate in the care of the dying, we may also help the living better prepare for the process of dying and the inevitability of death. In his seminal work, The Patient as Person, Paul Ramsey said, “‘The process of dying’ needs to be got out of the hospitals and back into the home and in the midst of family, neighborhood, and friends. This would be a ‘systemic change’ in our present institutions for caring for the dying as difficult to bring about as some fundamental change in foreign policy or the nation state” (Ramsey 135).

This systemic change is difficult to bring about because it must overcome profound changes in way families are structured, the way care is provided, and the way society perceives death. Care in hospitals is often synonymous with technology. In the home, “care” implies being with a paid caregiver. Many, if not most, people would prefer to die at home with loved ones, but loved ones are rarely home, and few can afford to take off months or sometimes years to care for a dying person no matter how strong the bonds of love. What’s more, the dying person is often caught between the medical urging to prolong death at all costs and the discomfort with death of caregivers. Jack Coulehan captures this tension well:
The term invisible death sounds rather benign, but its invisibility ultimately carries with it a lack of preparation and inability to cope with the savage beast. Savagery emerges from its lair in many guises, among which is the alluring face of medical technology. Closely bound up with the reclusion of death from social life is the embarrassment that the living feel in the presence of dying people (Jack Coulehan, 37).

The embarrassment could be relieved by a program of death education, support for home death, and greater acknowledgment and discussion of death in our society. Often, the natural processes of death can be shocking to those who are with a loved one at the time of death. A few short conversations with caregivers about the processes dying people experience would lessen the anxiety and shock of the caregivers when the dying person begins to gag, wheeze, cough up fluids, and so on.

Narratives are filled with evidence that death, distant and medicalized, is not what patients desire. Poet Donald Hall was married to the much younger poet, Jane Kenyon. To the surprise of both, it was Kenyon who died first, of leukemia. Hall was in a position to care for her in their home. He was strong enough physically to lift her, and strong enough mentally to face death with her, although he narrates his experience in excruciating detail in his book of poetry, In Memoriam. Even given his ability to care for her and her desire to die at home, she almost died in a hospital. Hall writes,

When she couldn’t stand, how could she walk?
He feared she would fall
and called for an ambulance to the hospital,
but when he told Jane,
her mouth twisted down and tears started.
‘Do we have to?” He canceled.
Jane said, ‘Perkins, be with me when I die (41 Hall).

Ultimately, he had a change of heart, and she died as she stared at him with eyes full of “dread and love.” This was her desire and he fulfilled it out of love and devotion for her, surely he benefited as well. Besides the knowledge that he honored the dying wish of his beloved wife, he also had an experience of death that was excruciating but also filled with care and valuable to him. The exquisite pain of the experience shows through his words. Death will always be unwelcome, but, oddly, we may learn that we can “survive” death in the sense that we know everyone will pass on successfully and that we move beyond pain rather than toward it.

Activists have made an effort to educate parents about the dangers of “medicalizing” birth. They claim that birth is a much richer experience when done as naturally as possible in the presence only of the family and a birth attendant, rather than a hospital room full of strangers and exotic technology. The movement for home death echoes many of the arguments for home birth. Indeed, those who favor home birth are more likely to favor home death as well. Researchers also observe a correlation between areas where home births are common and areas where home death is common. These correlations may relate to shared social values, but they may also be a result of the proximity of individuals to hospitals or other care facilities.

A study published in the American Journal of Public Health by Silviera, Copeland, and Feudtner in 2006 attempted to analyze the contribution of social values to home death as opposed to other factors such as availability of hospital beds and income. In part, the conclusion stated, “Although we found that hospital bed availability was associated with hospital death at the individual level, the relationship became insignificant at the aggregate level” (6). The study notes that about 90 percent of patients state a preference for dying at home but only about one-third are able to do so. The correlation with home birth seems to reflect some shared social values, but the analysis is extremely difficult. Still, the authors have suggestions for increasing the number of deaths that occur in the home. They say, “Reducing the proportion of people who die where they had not wanted to die is likely to require programs that address individuals, their society, and its cultural values, and the health system in which they reside” (7). Any attempt to increase the number of home deaths will require concerted effort to educate both the public and health care professionals in addition to more alternatives to hospital care.

Cultural Considerations

Those educated to be culturally competent will recognize that the desire of a family to wash and prepare the body of a deceased loved one is common to many cultures. With a few exceptions, the more faith a society places on technology, the more distant its citizens will be from the process of death. A number of obvious reasons present themselves. Many people believe death can be kept at bay longer if their loved ones are in a hospital receiving the best care modern technology can provide. This, of course, implies an unwillingness to accept the inevitability of death and a deep fear of the process of dying, which should in this view be left to the experts.

In an essay published in 1975, Jack Goody describes Western attitudes toward death:
Only the bare bones of death are seen today in Western societies. With smaller households and low mortality, each individual experiences a close death very infrequently, if we understand close in both a spatial and social sense. In childhood, one is often kept away from the immediate facts of death, either by parents (if it is a sibling) or by relatives and friends, if it is a parent. Grief is suppressed rather than externalized (7).

In the last century, we have become more and more distant from death, especially in the United States. Many adults have never seen a corpse. This enables denial of death for a time, but it prepares one poorly for the fact of death when it occurs. In pre-industrial societies it is impossible to avoid the reality of death. The fact that technology and affluence have enabled us in the West to isolate ourselves from death does not mean it is good to do so, for death has not been eradicated, only hidden from view. The psychological and spiritual, however one defines the term, benefits of experiencing the death of others in a loving and close manner will benefit us all as a society. We will become habituated, to put it in Aristotelian terms, to care and grieve with greater immediacy and efficacy.

In the past, Americans were much more familiar with death in every aspect, and I would not want to return to the conditions of pre-Civil War America. In this era, as described by Lewis O. Saum in “Death in Pre-Civil War America, death was so ubiquitous that almost no one had failed to be in the presence of a dying person, often a child. He describes a society in which every letter was opened with dread because it was sure to have news of more death. Letters generally contained graphic details of the effects of disease and dying, and the general populace knew well the signs of impending death. They realized, also, that no one was immune from death. All the same, death was recognized as a chance to behave morally. To die well was to accept the fate of Providence. In addition, most felt that the proximity of death gave an opportunity for spiritual growth and reflection. Saum says, “Philosophy has been referred to as the learning to die, and insofar as humble Americans philosophized they did indeed learn to die” (39). Those who are constantly aware of death tend to choose their actions more carefully than those who are denying the existence of death. They lead deeper spiritual lives. Although it may happen, it is not necessary for modern American culture to experience pandemic or massive loss of life from violence or war such as existed in pre-Civil War America to regain familiarity with death. More care for loved ones and more frank discussion about the process of dying could help regain some of the benefits with our earlier experience with death without having to revive the horrifying conditions that provided them.

Philippe Aries describes the transition from the home to the hospital for death and the family. He notes, “Rapid advances in comfort, privacy, personal hygiene, and ideas about asepsis have made everyone more delicate. Our senses can no longer tolerate the sights and smells that in the early nineteenth century were a part of daily life, along with suffering and illness” (Hour 570). Advances in hygiene, comfort, and privacy were certainly goods freely chosen by most Americans. Again, we have no one to demonize, but few could foresee the consequences of this shift to what was thought to be life-prolonging and medically superior—indeed the hospital was life-prolonging and medically superior. Aries notes that the burden of care had been shared by extended families and neighbors, but the circle began shrinking in the twentieth century. He says, “This little circle of participation steadily contracted until it was limited to the closest relatives or even to the couple, to the exclusion of the children. Finally, in the twentieth-century cities, the presence of a terminal patient in a small apartment made it very difficult to provide home care and carry on a job at the same time” (570). In contemporary America, the burden of care frequently falls to one person, a spouse or single son or daughter. Perhaps society did not set out to remove itself from death; it is merely one of the more dire consequences. Many think it morbid to talk openly of the need to be present at the death of a close relative or friend. Death has been placed behind a privacy curtain of a hospital. Aries notes, “The hospital is the only place where death is sure of escaping a visibility—or what remains of it—that is hereafter regarded as unsuitable and morbid. The hospital has become the place of solitary death” (571). It is not bad manners to discuss death openly. My teenaged son is interested in mortuary science and funerary practices. He has read books on the subject, visited funeral museums on two continents, and become something of an expert. As a result, his school counselors called his parents into a meeting to discuss the possibility that he was psychologically disturbed or suicidal. It was incomprehensible to the mental health professional of the twenty-first century that an interest and knowledge of death could be expressed in a psychologically healthful manner.

Just how closeness to death enriches our lives is as difficult to define as exactly how art enriches our lives or the study of the humanities. What we take away from a death experience may be as varied as what audience members take away from a tragic drama or moving symphony. Simone de Beauvoir describes her mothers death saying, “Cancer, thrombosis, pneumonia: it is as violent and unforeseen as an engine stopping in the middle of the sky. My mother encouraged one to be optimistic when, crippled with arthritis and dying, she asserted the infinite value of each instant; but her vain tenaciousness also ripped and tore the reassuring curtain of everyday triviality” (526). Certainly some of us would rather stay behind the curtain of everyday triviality and enjoy a greater distance from death.

In 1987, my grandmother’s brother died of bone cancer. Within six weeks my grandfather has succumbed to lung cancer. Only weeks later, fire that resulted from lightning destroyed her home. My uncle, a country preacher, told her how wonderful it was that God had been with her throughout this horrible ordeal. He seemed desperate to regain some “everyday triviality,” but death has a way of forcing a deeper meaning on us. Indeed, the conversation we have with death throughout our lives informs all that we do, and we harm ourselves when we cough politely and dismiss ourselves at the earliest convenience. A meaningful life demands more of us. In the words of Eric Cassell, “In the care of the dying, it may give back to the living the meaning of death” (48). Although we know that death is still inevitable, we want to deny its existence. Aries says, “The tears of the bereaved have become comparable to the excretions of the diseased. Both are distasteful. Death has been banished” (580). It would be difficult not to celebrate the success at pushing death a little further away. No longer do parents withhold attachment to their children until they feel more certain they may live. No longer is calamity floating to us on every breeze, but this tide of great accomplishment separates us from our humanity and meaning. And death, still, is not vanquished but merely held at bay.

Patient Autonomy

Most patients express a wish to die at home rather than in a hospital among strangers, yet most people in America die in a hospital. Many people die in emergency situations, and dying in a hospital presents ethical qualms for virtually no one. Others, however, desire to die at home but get caught up in the fight against death rather than care for dying. Medical interventions and efforts to prolong life take precedence over providing the care the patient has requested.
Jeffrey Stout provides a typical narrative of how death occurs in America:
My maternal grandfather, for all his traditional skill in carrying out his own dying, did not die in his bedroom at home. Like the vast majority of Americans today, he died in a hospital, which he experienced as a sprawling bureaucracy, run by managers, staffed by technical experts, and clogged with advanced technology he could neither understand nor do without . . . . After days of frustration, he finally called a couple of doctors into his room and vented his moral outrage (Stout 275).
The death of Stout’s grandfather is what Philippe Aries refers to as the bad death or ugly death. In his description of the bad death, he says,

This is always the death of a patient who knows. In some cases he is rebellious and aggressive; he screams. In other cases, which are no less feared by the medical team, he accepts his death, concentrates on it, and turns to the wall, loses interest in the world around him, cuts off communication with it. Doctors and nurses reject this rejection, which denies their existence and discourages their efforts (587).

The usual demon of bioethics, the paternalistic physician, is not the problem in this case. Any doctor would be reasonable in assuming that patients brought to the hospital were brought there for care. By pushing death into the hospital, we have created an untenable situation for medical teams. Any given professional providing care for Stout’s grandfather would probably agree that a home death would be preferable. This is true for most patients with long-term, terminal illnesses. Generally, patient autonomy is not taken away by paternalistic hospital staff; it slips into a bureaucracy created to fight death, not accommodate it. Patients themselves or their caregivers may voluntarily check into a hospital when a medical crisis occurs without foreseeing that they are in effect asking the doctors to treat their condition rather than to allow death its natural progression. Indeed, when a patient is presented to hospital staff, they must assume that the patient is seeking treatment to prolong life. To withhold treatment in this case could lead to a charge of negligence.

Patient autonomy may also be limited by external factors. To take the extreme and most obvious example, the wish to die at home can only be accommodated for those who have a home. The wish to die among family members can only be afforded those with loving family members. The patient’s wishes can be respected but cannot be fulfilled anymore than the common wishes to marry a billionaire with eternally youthful good looks. The mere act of wanting something does not make it possible or obligatory. Patients may, of course, refuse treatment. The easiest way to avoid treatment, however, is to stay away from treatment providers. It is difficult to break old habits, though, and most of us are in the habit of going to doctors and hospitals when we feel bad.

In some cases, patients may not only express a preference for where they will die but for how their body will be prepared once they have passed. William May says, “While the body retains its recognizable form, even in death, it commands a certain respect. No longer a human presence, it still reminds us of that presence which once was utterly inseparable from it” (139). Does respect for autonomy extend beyond death? Philosopher Jeremy Bentham asked that his remains be preserved and kept at University College London as his “Auto Icon.” Perhaps he would not be thrilled with the results of the original efforts at preservation, but he was preserved, and his remains are still displayed at the university. Would we be violating Bentham’s autonomy by destroying or burying his remains? More to the point, can caregivers be accused of violating the autonomy of the dead recently deceased or otherwise? The first impulse is to say any reasonable request should be respected beyond death, but often our selfish ends make us think differently. Franz Kafka asked that all his manuscripts be destroyed when he died, but his friend Max Brod never carried out the request. As a result, Kafka has become a renowned author, and we may feel Brod did him a great favor by failing to carry out his dying wish. We could also take the view that Kafka was harmed by having his wish ignored.

Thomas Nagel gives some justification for respecting the wishes of the dead. He says, “When a man dies we are left with his corpse, and while a corpse can suffer the kind of mishap that may occur to an article of furniture, it is not a suitable object of pity. The man, however is. He has lost his life, and if he had not died, he would have continued to live it, and to possess whatever good there is in living” (7). The person who has died is still of value to us. Our obligations do not evaporate on the occasion of death. Decisions about whether a patient’s autonomy can be violated after death need clarification, but most families try to honor the free choices of their loved ones. This is more easily done when the patient is not handed over to strangers in a hospital. The exception is when the recently dead wished to donate usable organs. In cases of lingering illness, this is usually not a concern or even an option, but if donation is desired and possible, a hospital death may be recommended.

Caregiver Autonomy

Medical staff sometimes suggest (on occasion the suggestions may feel like force to the caregivers and patients) that patients be transferred to long-term critical care or hospice in spite of the preference of both the caregivers and the patients to have the death occur at home. Indeed, caring for a dying patient can be extremely traumatic and physically demanding, so the concerns of medical staff for the caregivers are understandable. One aspect of care for demented patients that is often overlooked is reduced inhibition. Having to lift and bathe an adult patient is physically demanding, cleaning feces and urine and changing diapers can be psychologically disturbing, but watching one’s parents engage in extremely inappropriate and embarrassing sexual behavior can be completely demoralizing. Given these realities, it is easy to understand why doctors and nurses would advise caregivers to consider long-term care or hospice over home care for the dying patient. Nonetheless, a beneficent denial of autonomy is still denial of autonomy.

A 2005 study published in Palliative Medicine examined the predictors for a home death. Not surprisingly, it found that home deaths were most likely to occur when the dying person wanted to die at home, when the physician visited the home during the last month of life, and when the care recipient had a healthy caregiver. The authors note that ethicists tend to focus on individual autonomy but that the autonomy of the caregiver cannot be ignored in this context. The article says, “The emphasis on individual autonomy overlooks the communal nature of death. When considering who is responsible for meeting the needs of the dying person, the informal caregiver plays a significant role. The choice of dying at home has profound consequences on informal caregivers, typically the wife or daughter” (497). Efforts to increase the number of home deaths must consider the need for support for caregivers and acknowledgment of the autonomy of caregivers. Sometimes the autonomy of the patient or caregiver must necessarily be compromised, so solutions should be sought that respect both. Some examples might include in-home hospice or palliative care, caregivers’ day out programs, or even out-of-home temporary services where a patient could be cared for outside the home for short periods to provide some brief respite for the caregiver. Ideally, families could work together to provide such solutions themselves, but it is not always possible for such solutions to work, especially with smaller families. In some cases, a hospital death may be the best option. In such a case, the authors of the study mentioned above suggest that we work to improve “the environmental qualities of institutions to enable them to offer the same things that people value about home deaths” (498). The worst any dying person should have to endure would be a death in a hospital in a quiet room with familiar and consistent caregivers. Proper education and social support should help caregivers cope with the disturbing behavior of dying and demented patients. Home death is unlikely to be successful when the needs of the caregivers are ignored.

In 2004, Cindy Cooley published an essay in the International Journal of Palliative Care exploring why patients in the United Kingdom are not able to choose where they die. Among other reasons, caregivers have difficulty getting hoists and other equipment that would enable them to care for the dying in the home. Providing equipment for home care would be cheaper than admitting patients to hospitals, but, again, bureaucracy works against the care team, whether it is made up of family or palliative care nurses.

I recently interviewed a woman in Galveston, Texas who cared for her dying father for three years as he died from Alzheimer’s Disease. He died in September 2006. During one medical crisis, she took him to the hospital for help. When he was to be released from the hospital, the staff told her he would need to be moved to a long-term care facility. The woman averred, explaining that she would care for him at home and that she had power of attorney. She was told that she would not be able to provide appropriate care and that it would be too much of a strain on her. She explained that she would prefer to decide for herself when she was over-taxed, rather than leaving the decision to strangers. A few months later, her father died in her arms at home as both he and she had wished. The medical staff members at the hospital were correct, though, that the strain was tremendous, and the process took a visible toll on her physically and mentally. Not only was the strain of caring for him sometimes surprisingly difficult, but she was not prepared for the bodily occurrences at the end. She had imagined holding him as he gently passed over to a state of calm, peaceful death. She was surprised by his convulsions, gasping, expelling of mucous, and other fluids. She struggled to comfort him in his last moments while also cleaning and restraining him. In spite of all this, she says she would do the same thing all over again.

One reason such situations occur is that medical emergencies as the one described above create chaos. Giving further reasons that patients do not die in the place of choice, Cooley also wrote, “Relatives may panic; they may be elderly or on their own and unsure if the end is imminent when the patient is gasping or panicking. Fear at the end is often enough to galvanize the relative into calling the emergency services . . . Doctors who are unfamiliar with the patient or unsure what to do to relieve distress may see the hospital as the safest option.” The result is that the patient dies in the hospital rather than home. Without sufficient education, it is impossible for caregivers to distinguish between the end of life and a passing crisis that requires intervention to provide comfort to the patient. This distinction is often difficult for professional caregivers, so it is understandable that family members would have trouble making a decision while watching a loved one in obvious discomfort or even agony.

The role of the caregiver complicates matters of patient autonomy in all cases here. Even a caregiver who wishes to honor the choice of the patient may weaken toward the end. The physical and psychological demands may be much greater than anticipated. Medical crises may be much more traumatic than anyone could imagine. Many dream of quietly holding a loved one and talking softly as the person gently slips into the comfort of death, but death is rarely so commodious. Even before such surprises, fewer caregivers than patients have a preference for the death to occur at home. They may agree to have the death in home only out of respect for a loved one. These caregivers may have enormous anxiety about watching someone die to begin with. Any sign of “emergency” that gives them reason to call an ambulance can be used to relieve them of an accepted but unwanted burden.
The authors of a Canadian study on home death note the nature of competing autonomous choices in home death, saying, “A central ethic in palliative care is the view that how people die should be grounded in self-control and choice. However, the emphasis on individual autonomy overlooks the communal nature of death. When considering who is responsible for meeting the needs of the dying person, the informal caregiver plays a significant role. The choice of dying at home has profound consequences on informal caregivers, typically the wife or daughter.”

In her book, Healing the Dying, Melodie Olson gives advice to caregivers. She advises caregivers to recognize their physical limitations and get help when needed. This is good advice, but it assumes that help is available. Most caregivers probably do not endure the strain and ardor of care alone out of choice. It is difficult to imagine caregivers turning away genuine offers of support. Olson also advises caregivers to sleep as much as needed. Again, she assumes that patients will be cooperative and put their needs on hold long enough for caregivers to get adequate rest. She also advises, among other things, to take advantage of respite care (182). Rather than viewing her list as good advice for caregivers, it would make sense to view it as a list of caregiver needs. Both patients and caregivers sometimes opt for hospice or hospital care as the time of death approaches. One might guess this is caused by the unexpected hardship of a home death. Patients will be much more likely to die at home if caregivers are provided respite care, opportunities to sleep and exercise, and help with strenuous physical tasks. Home death is more likely to occur when home caregivers are given support, information, and alternative access to services. A home visit from a physician may not be necessary. Visits from social workers, nurses, or other professionals may prove extremely useful in improving success for home deaths in the U.S.

Death with Dignity

Jack Coulehan describes two distinct movements for death with dignity. One is rooted in a philosophical tradition defending self-determination and individual rights, specifically the right to euthanasia and assisted suicide. This movement promotes social changes that will prevent patients from living beyond their normal lifespan and promotes aid in dying. The other movement to promote death with dignity focuses on relationships between the dying person and others. This movement recognizes the communal nature of death and seeks to shine a light on the “invisible death” described by Aries. The relational concept of death with dignity described by Coulehan advocates a more humane way to approach the “art of dying,” even if it must be done in a hospital.

This relational movement for death with dignity does not focus solely on the dignity of the patient. We are concerned now for the dignity of caregivers, family, friends, and society. Instead of being invisible, death will be publicly recognized and mourning will no longer be considered impolite or embarrassing. Society will have tolerance for the concerns of the dying patient and the grief and passion of the caregivers. We will recognize that leading an authentic life will require an acceptance and recognition of death.

A return to communal death and mourning will not come easy, but small steps and bring continual improvement. Already, hospice care is becoming more available and bringing families into contact with dying relatives. This is not a complete answer, but it is improvement for a society so accustomed to hiding death. In addition to hospice care, availability of medical equipment in the home can help facilitate a dignified death without undue strain on caregivers. Respite care, provided in home or in a medical facility, can make it possible for caregivers to keep loved ones at home when it might otherwise be necessary to put them in a hospital. Proper death education can help caregivers recognize the signs of impending death without panicking and calling an ambulance to relieve the agony of the dying person. As we learn to better prepare for death as a society, as families, and as individuals we will live fuller and deeper lives with greater appreciation for the sensations of earthly existence.