16.2 Choices in Dying

Do you recoil at the thought of “choices in dying”? If so, you may be living in the wrong century. Every twenty-first-century death involves choices, beginning with risks taken or not. This is very apparent in accidents and most diseases. For example, heart disease and stroke, which accounted for 7 million and 6.2 million deaths respectively worldwide in 2011 (WHO, 2013c), involve a multitude of choices, not only in behaviours that increase risk but also after diagnosis—that is, whether medical treatment is provided and, if so, what, where, and when. Ideally, when confronted with a life-threatening illness, the patient decides. We now describe some of these choices.

A Good Death

People everywhere hope for a good death (Vogel, 2011), one that is

• at the end of a long life
• peaceful
• quick
• in familiar surroundings
• with family and friends present
• without pain, confusion, or discomfort.

Those six characteristics are accepted by almost everyone, but other aspects are less universal. Many would add that control over circumstances and acceptance of the outcome are also characteristic of a good death. However, it is important to note that this varies by culture and individuals. For example, some dying individuals willingly cede control to doctors or caregivers, and some fight every sign that death is near. Since individuals and cultures disagree on what is considered good, then the term “good death” can also be confusing (Bauer-Maglin & Perry, 2010).

Although aspects of a good death are culturally driven, a bad death (lacking the six characteristics above) is universally dreaded, particularly by the elderly. Many of them have known people who died in hospitals, semi-conscious, and alone. Sadly, even though most people would prefer to die at home (Canadian Institute for Health Information, 2007), about 65 percent of Canadian deaths in 2011 took place in hospitals (Statistics Canada, 2012i).

In some ways, modern medicine makes a good death more likely. The first item on the list has become the norm: Death usually occurs at the end of a long life. Younger people still get sick, but surgery, drugs, radiation, and rehabilitation typically mean that, in developed countries, the ill go to the hospital, are treated, and then return home.

In other ways, however, contemporary advances have made a bad death more likely. Instead of acceptance, which allows people to die peacefully at home with close friends, people attempt to fight death with surgery and drugs that prolong pain and confusion rather than restore health and comfort. Patients may become delirious or unconscious, unable to die in peace, and hospitals may exclude visitors at the most critical stage of patient illness.

The underlying problem may be medical care itself, so focused on life-saving that dying becomes victim to well-intentioned over-medicalization (Ashby, 2009). Fortunately, three factors that make a good death more likely have increased: honest conversation, the hospice, and palliative care.

Honest ConversationIn about 1960, psychiatrist Elisabeth Kübler-Ross (1969, 1975) asked the administrator of a large Chicago hospital for permission to speak with dying patients. He informed her that no one in the hospital was dying! Eventually, she found a few terminally ill patients who, to everyone’s surprise, wanted very much to talk.

From ongoing interviews, Kübler-Ross identified emotions experienced by dying people, which she divided into a sequence of five stages:

1. Denial (“I am not really dying”)xs
2. Anger (“I blame my doctors, or my family, or God for my death”)
3. Bargaining (“I will be good from now on if I can live”)
4. Depression (“I don’t care about anything; nothing matters anymore”)
5. Acceptance (“I accept my death as part of life.”)

Another set of stages of dying is based on Abraham Maslow’s hierarchy of needs, discussed in Chapter 1 (Zalenski & Raspa, 2006):

1. Physiological needs (freedom from pain)
2. Safety (no abandonment)
3. Love and acceptance (from close family and friends)
4. Respect (from caregivers)
5. Self-actualization (appreciating one’s unique past and present).

Maslow later suggested a possible sixth stage, self-transcendence (Koltko-Rivera, 2006), which emphasizes the acceptance of death.

Other researchers have not found sequential stages in dying people’s approach to death. Remember the woman, cited earlier, who was dying of a sarcoma? She said that she would never accept death and that Kübler-Ross should have included desperation as a stage.

Many thanatologists find that the stages of denial, anger, and depression disappear and reappear, that bargaining is brief because it is fruitless, and that acceptance may never occur. Regarding Maslow, although all of his levels are important throughout the dying process, there is no set sequence.

Nevertheless, both lists remind caregivers that each dying person has emotions and needs that may be unlike those of another—or even unlike that same person’s emotions and needs a few days or weeks earlier. Furthermore, a dying person’s emotions may not be what family, medical personnel, and others might expect.

It is important for everyone—doctors, nurses, family, friends, and the patient—to know that a person is dying; then, care is more likely to improve rather than degrade (Lundquist et al., 2011). Unfortunately, even if a patient is terminally ill with incurable cancer, most doctors never ask what end-of-life care the patient wants. One study found that doctors discussed final care with their patients only 31 percent of the time. Those patients who did not have such a conversation (69 percent) experienced more pain and procedures, but not a longer life, than those who did discuss final care (Zhang et al., 2009).

As Kübler-Ross and others have discovered, most dying people want to spend time with loved ones and to talk honestly with medical and religious professionals. Human relationships are crucial: People continue to need each other (Planalp & Trost, 2008). Dying patients do not want to be cut off from daily life; they want to know what their relatives and friends are doing and how they are feeling.

However, avoid assumptions. Kübler-Ross also stressed that each person responds to death in his or her own way; some people do not want the whole truth, and some do not want many visitors. In some cultures, telling people they are dying is thought to destroy hope. Indeed, even maintaining human relationships via long, intimate conversations may be counter to certain religious beliefs, for instance, when the purpose of death is seen as relinquishing ties to this world (Baugher, 2008).

The HospiceIn 1950s London, England, Cecily Saunders opened the first modern hospice, where terminally ill people could spend their last days in comfort (Saunders, 1978). Thousands of other such places have opened in many nations, staffed by doctors, nurses, psychologists, social workers, clergy, music therapists, and so on who provide individualized care day and night. In addition, hundreds of thousands of hospice caregivers bring medication and care to dying people where they live, including in their home.

Hospice professionals relieve pain and discomfort, not only with drugs but also with massage, bathing, and so on. They avoid measures that merely delay death; their aim is to make dying easier. There are two principles of hospice care:

• Each patient’s autonomy and decisions are respected. For example, pain medication is readily available, not on a strict schedule or at a minimal dosage.
• Family members and friends are counselled before the death, taught to provide care, and guided in mourning. Hospice personnel believe that the mourners’ needs, both before and after the death, are as important as the needs of the patient.

Unfortunately, hospice care is far from universally available, even in wealthy nations, much less in developing ones (Kiernan, 2010). For example, hospice care is more common in England than in mainland Europe and more common in some Canadian provinces or territories than in others. Depending on their location, only 16 to 30 percent of Canadians who are dying have access to hospice services.

Same Situation, Far Apart: Getting Support People with amyotrophic lateral sclerosis (ALS), also referred to as Lou Gehrig’s disease, require ongoing support, as this patient in Manitoba (left) is receiving, and often need hospice care, just as this man from India (right) is receiving. He is seen here with his family, in a Catholic hospice in Andhra Pradesh.

CP IMAGES/WINNIPEG FREE PRESS/MARC GALLANT
CHRIS STOWERS/PANOS PICTURES

Financial challenges restrict the size and scope of hospice programs as well as access to them, especially for patients in remote or rural areas of Canada (Canadian Hospice Palliative Care Association [CHPCA], 2012). To date, only some Canadian provinces and territories have acknowledged that hospice palliative care is a core health service under their health plans. Other provinces or territories have placed this form of care within home care and other health service budgets. Such programs are more vulnerable to budget reductions (CHPCA, 2012). As a result, the costs of hospices are often shouldered by private donors, with family members also paying a portion of the costs.

Home hospice care is less expensive than care in a separate institution, but caregiv-ers are needed, day and night. Hospice nurses often train family members to offer care, but not everyone has such family members available. In 2003, 23 percent of Canadians reported that they were caregivers for a family member or friend in the last year. This caregiving had certain negative consequences for the caregivers, including using up their personal savings (41 percent) and missing at least one month of work (22 percent). Other negative effects were reported in 2006, such as strains on mental health (41 percent) and physical health (38 percent). Some experts have estimated that in 2009 the replacement costs for such unpaid caregiving in Canada ranged between 25 and 26 billion dollars (CHPCA, 2012).

Palliative CareThe same “bad death” conditions that inspired the hospice movement have led to palliative care, a medical specialty that focuses on the relief of pain and suffering, as well as emotional support to the patient and his or her family. Often powerful painkillers are given to the patient. These painkillers were once prescribed sparingly because of their addictive properties; however, palliative approaches came to view the risk of drug addiction as secondary to the greater goal of freedom from pain for the dying.

Morphine and other opiates do, however, have a double effect: They relieve pain (a positive effect), but they also slow down respiration (a negative effect). A painkiller that reduces both pain and breathing is considered acceptable in law, ethics, and medical practice. In England, for instance, although it is illegal to cause the death of a terminally ill patient (even one who repeatedly asks to die), it is legal to prescribe drugs that have a double effect. One-third of all English deaths include such drugs.

Deciding When Death Occurs

In earlier times, death occurred when an organ shut down, but not now. Breathing continues with respirators, stopped hearts are restarted, stomach tubes provide calories, and medication fights pneumonia. At what point, if ever, should such measures be halted so that death will occur?

Ethical dilemmas arise in almost every life-threatening condition. Treatments are avoided, started, or stopped, prolonging life, or hastening dying. This has fostered impassioned arguments about ethics, both among nations (evidenced by radically different laws) and within nations. Family members, religious advisers, doctors, and lawyers disagree among themselves and with one another (Ball, 2012; Engelhardt, 2012; Prado, 2008).

Historically, death was determined by listening to a person’s heart: No heartbeat meant death. To make sure, a feather was put to the person’s nose to detect respiration—a person who did not exhale was pronounced dead. Very rarely, but widely publicized when it happened, a person was declared dead when in fact he or she was alive.

Modern medicine has changed that: If an individual is still alive but not capable of breathing on his or her own, respirators can pump air into the lungs and life can continue. Many other life-support measures and medical interventions now circumvent the diseases and organ failures that once caused death. Checking breathing with feathers is a curiosity, thankfully never used today. But how can we know for sure when death has occurred?

In the late 1970s, a group of Harvard physicians concluded that when brain waves ceased, death occurred. This definition is now used worldwide (Wijdicks et al., 2010). However, many doctors now suggest that death can occur even if primitive brain waves continue (Kellehear, 2008; Truog, 2007) (see Table EP.2).

Some researchers attempt to distinguish between people who are in a permanent vegetative state (and thus will never regain the ability to think) and those who are in a coma but could recover. Many scientists seek to define death more precisely than was possible even 30 years ago. One crucial factor is whether the person could ever again be expected to breathe without a respirator, but that is hard to guarantee if “ever again” includes the distant future.

In 2008, the American Academy of Neurology gathered experts to conduct a meta-analysis of all the recently published studies regarding end-of-life brain functioning. They found 38 empirical articles. Two experts independently read each one, noting what measures were used to determine death and how much time was required between lack of brain function and the pronouncement of a person’s death. They reached no consensus. Only two indicators of death were confirmed: Dead people no longer breathe spontaneously, and their eyes no longer respond to pain.

There is no definitive, instant test to indicate when a person is brain-dead (Wijdicks et al., 2010). Thus, family members may spend weeks, sometimes months or years, hoping for life long after medical experts believe no recovery is possible.

In October 2013, the Supreme Court of Canada dismissed an appeal by two Toronto doctors who wanted to stop treatment of a patient with severe brain damage, Hassan Rasouli, aged 61. Rasouli had developed meningitis and suffered brain damage after undergoing surgery to remove a brain tumour in 2010. He fell into a coma and was put on a ventilator. Parichehr Salasel, Rasouli’s wife and a doctor herself, was his designated decision maker, and she refused permission to take him off the ventilator. She and her daughters maintained that Rasouli was in a “minimally conscious state”—that he did respond to stimulation and was capable of communicating with them.

Supreme Court Chief Justice Beverly McLachlin wrote in the majority opinion on the case, “By removing medical services that are keeping a patient alive, withdrawal of life support impacts patient autonomy in the most fundamental way.” One legal expert said it appeared that the Court wanted to avoid giving doctors the right to make such decisions on their own, against the wishes of the patient’s family (Mulholland, 2013).

Life Support Issues Hassan Rasouli, pictured here with his wife (left) and daughter (right) in Sunnybrook Hospital, Toronto, developed an infection after surgery in 2010 and slipped into a coma. His doctors wanted to take him off life support, but his family refused. The case went to the Supreme Court of Canada, which ruled that doctors cannot unilaterally choose to end life support services for Rasouli.

CARLOS OSORIO/TORONTO STAR VIA GETTY IMAGES

Ethical QuandariesAs you have read, death can be postponed with antibiotics and other drugs, surgery, respirators, and stomach tubes, which is partly why the average person today lives twice as long as the average person did a century ago. Yet many elderly people fear being kept alive too long when death is near. Their concerns raise ethical questions—especially when they are considering measures such as suicide and euthanasia.

In passive euthanasia, a person nearing death is simply allowed to die in due course. The chart of a patient may include a DNR (do not resuscitate) order, which instructs the medical staff not to restore breathing or restart the heart if breathing or pulsating stops. A DNR usually reflects the expressed wishes of the patient or health care proxy (discussed below).

Passive euthanasia is legal everywhere, but many emergency personnel start artificial respiration and stimulate hearts without taking time to read a person’s chart to ascertain whether DNR has been chosen. Then the issue becomes more complex because removing life support may be considered active euthanasia.

Active euthanasia is deliberately doing something to cause a person’s death, such as turning off a respirator before a person has been declared brain-dead or giving the person a lethal drug. Some physicians perform active euthanasia when confronted with three conditions: (1) suffering they cannot relieve, (2) illness they cannot cure, and (3) a patient who wants to die. Active euthanasia is legal under some circumstances in the Netherlands, Belgium, Luxembourg, and Switzerland, but it is illegal (yet rarely prosecuted) elsewhere.

Many people see a major moral distinction between active and passive euthanasia, although the final result is the same. A survey of physicians in the United States found that while a majority (69 percent) objected to active euthanasia, few (18 percent) objected to sedation that had a double effect. Even fewer (5 percent) objected to withdrawing life support when a patient was brain-dead (Curlin et al., 2008). A similar survey in seven other nations found wide variations within and among them, with some physicians saying they would never perform active euthanasia and others reporting they had done so (Löfmark et al., 2008).

In Canada, a 2013 survey carried out for LifeCanada by the Environics Research Group found that 55 percent of Canadians were in favour of legalizing active euthanasia compared with 40 percent who opposed such a measure. However, only 18 percent of those surveyed “strongly” supported euthanasia; the majority of those in favour said they “somewhat” supported it. Support was strongest in Quebec and among men; opposition was strongest among older Canadians, people without a high school education, and those in the lowest income bracket (Environics, 2013).

When Doctors Help People DieBetween passive and active euthanasia is another end-of-life option: Someone may provide the means for an alert patient to end his or her own life. Some people advocate physician-assisted suicide, whereby a doctor provides lethal medication that a patient can then swallow in order to die. Acceptance of physician-assisted suicide varies markedly by culture, religion, education, and local values (Prado, 2008; Verbakel & Jaspers, 2010).

The Netherlands first permitted active euthanasia and physician-assisted suicide in 1980 and refined the law in 2002. The patient must be clear and aware in making the request, and the goal is to halt “unbearable suffering” (Buiting et al., 2009). Consequently, the physician’s first response is to make the suffering bearable, usually by increasing or changing medication. However a qualitative analysis found that “fatigue, pain, decline, negative feelings, loss of self, fear of future suffering, dependency, loss of autonomy, being worn out, being a burden, loneliness, loss of all that makes life worth living, hopelessness, pointlessness, and being tired of living were constituent elements of unbearable suffering” (Dees et al., 2011). Obviously, medication cannot alleviate all those.

Two other nations near the Netherlands—Belgium and Luxembourg—passed similar laws. Switzerland, on the other hand, has not passed regulations as to when doctors may, and may not, hasten death; however, it has explicitly declined to prosecute doctors who do so.

Voters in the state of Oregon approved physician-assisted suicide (but not other forms of active euthanasia) in 1994 and again in 1997, explicitly asserting that such deaths should be called “death with dignity,” not suicide. The first such legal deaths occurred in 1998.

Oregon’s law requires the following:

• The dying person must be an adult and an Oregon resident.
• The dying person must request the lethal drugs twice orally and once in writing.
• Fifteen days must elapse between the first request and the prescription.
• Two physicians must confirm that the person is terminally ill, has less than six months to live, and is competent (i.e., not mentally impaired or depressed).

The law also requires record-keeping and annual reporting.

Between 1998 and 2013, more than 190 000 people in Oregon died; 752 of those obtained prescriptions for lethal drugs and used them to die. As Table EP.3 shows, Oregon residents requested the drugs primarily for psychological, not biological, reasons—they were more concerned about their autonomy than their pain.

In 2013 alone, 122 Oregonians obtained lethal prescriptions, and 63 used them to die. Most of the rest died naturally, but some were still alive at the end of that year and thought they might use the drug in the future (according to data from previous years, about 10 percent of the people who obtain the prescription save it to use in the following year) (Oregon Public Health Division, 2014).

In Canada, the United Kingdom, Australia, and New Zealand, suicide is legal, but voluntary euthanasia and assisted suicide are not. There have been two high-profile Canadian court cases regarding the “right to die” the first involving Sue Rodriguez and the second involving Gloria Taylor. Both women suffered from amyotrophic lateral sclerosis (ALS). ALS eventually paralyzes muscles throughout the body, causing chronic pain and eventually death, but without affecting cognitive functioning.

In her 1993 case before the Supreme Court of Canada, Sue Rodriquez cited section 241(b) of the Canadian Charter of Rights and Freedoms, arguing that she had a right to “life, liberty, and security of the person” She interpreted this as her right to decide how, when, and under what circumstances she would die. Although the Supreme Court ruled against her, it did so by the narrowest of margins: the vote was five to four.

Almost 20 years later, Gloria Taylor also challenged the law against assisted suicide. Being unsuccessful in Canada, she ended up travelling to Switzerland, where a doctor aided her in committing suicide.

In the LifeCanada survey mentioned above, Canadians were almost twice as likely to support physician-assisted suicide as to oppose it (63 percent versus 32 percent), but less than a third of those surveyed (29 percent) expressed strong support for such a law. The highest level of support for physician-assisted suicide was in British Columbia, where the Supreme Court had recently struck down a law against doctor-assisted deaths (Environics, 2013).

Physician-Assisted Suicide Dr. Donald Low was a Canadian microbiologist known for his role in battling the outbreak of severe acute respiratory syndrome (SARS) in Toronto in 2003. He died September 18, 2013, from a brain tumour. Eight days before his death, he created a YouTube video in which he made an impassioned plea to legalize physician-assisted suicide for terminally ill patients in Canada. He said, “I’m going to die, but what worries me is how I’m going to die…I wish [assisted suicide opponents] could live in my body for 24 hours …” (Low, 2013).

STEVE RUSSELL/TORONTO STAR VIA GETTY IMAGES

Some of the arguments raised in favour of legalizing euthanasia and assisted suicide are:

• each person’s right to autonomy and freedom of choice
• the medical limitations on alleviating a patient’s pain and suffering
• section 15 of the Canadian Charter of Rights and Freedoms, which has been interpreted to allow able-bodied people, but not those with physical limitations, to commit suicide.

Arguments against this legalization include:

• the belief that there is a fundamental societal value for the respect of life, and that killing another human being is intrinsically wrong
• the fear that legalizing euthanasia or assisted suicide may result in abuse of the law, and may make some people—for example, the disabled and very old—vulnerable to the “decision makers” (this is known as the “slippery slope” argument) (see Opposing Perspectives)
• the corresponding fear that this law may limit potential medical advances and research to improve care, since doctors may consider euthanasia an easier and quicker solution than healing or palliative care (Butler et al., 2013).

At present, it is difficult to tell how the law will evolve in Canada. As noted above, in October 2013, the British Columbia Court of Appeals overturned the earlier decision by the provincial Supreme Court that declared the law against physician-assisted suicide unconstitutional. The case appears to be headed once again to the Supreme Court of Canada; there are conflicting opinions over what the Court’s decision might be this time around.

Advance DirectivesMany people hope to increase personal choice about death, opting for advance directives—a person’s instructions regarding end-of-life medical care, written before such care is needed.

Some people try to exert control over their dying by creating a living will and/or assigning a health care proxy. Recognizing that individuals differ dramatically on specifics, hospitals and hospices strongly recommend both of these. Nonetheless, most people resist: A study of cancer patients in a leading hospital found that only 16 percent had living wills and only 48 percent had designated a proxy (Halpern et al., 2011).

A living will indicates what sort of medical intervention a person wants or does not want in the event that he or she becomes unable to express those preferences. Of course, if the person is conscious and lucid, hospital personnel ask about each specific procedure, often requiring written consent before surgery. The patient can override any instructions that he or she included in the living will. The reason a person might want to override earlier wishes is that living wills include phrases such as “incurable,” “reasonable chance of recovery,” and “extraordinary measures”; it is difficult to know what those phrases mean until a specific issue arises. Doctors and family members also disagree about what is “extraordinary” or “reasonable.”

Some people designate a health care proxy, another person to make medical decisions for them if they become unable to do so. That seems logical, but unfortunately neither a living will nor a health care proxy guarantees that medical care will be exactly what a person would choose. For one thing, designated proxies often find it difficult to allow a loved one to die if there is any chance of recovery.

A larger problem is that few people—experts included—understand the risks, benefits, and alternatives to every medical procedure. That makes it difficult to decide for oneself, much less for a family member, exactly when the risks outweigh the benefits. Even people who have been married for years do not necessarily know their partner’s wishes; husbands are more likely than wives to believe they know, but are less likely to be accurate (Zettel-Watson et al., 2008). In addition, family members may be on opposite sides when it comes to specifics.

A heartbreaking example occurred in the case of a Florida woman named Theresa (Terri) Schiavo. Terri was 26 years old when her heart suddenly stopped. Emergency personnel restarted it, but she fell into a deep coma. Like almost everyone her age, Terri had no advance directives. A court designated Michael, her husband of six years, as her health care proxy.

Michael attempted many measures to bring back his wife, but after 11 years he accepted her doctors’ repeated diagnosis: Terri was in a persistent vegetative state. He petitioned to have her feeding tube removed. The court agreed, noting the testimony of witnesses who said that Terri had told them that she never wanted to be on life support. Terri’s parents appealed the decision, but lost. They then pleaded with the public.

The Florida legislature responded, passing a law that required that the tube be reinserted. After three more years of legal wrangling, the U.S. Supreme Court ruled that the lower courts were correct. Then the U.S. Congress passed a law requiring that artificial feeding be continued, but that law was overturned as unconstitutional. The stomach tube was removed, and Terri died on March 31, 2005—although some maintained that she had really died 15 years earlier.

Partly because of the conflicts among family members, and between appointed judges and elected politicians, Terri’s case caught media attention. Every North American newspaper and television station was following the case, inspiring vigils and protests. Lost in that blitz, though, are the thousands of other mothers and fathers, husbands and wives, sons and daughters, judges and politicians, doctors and nurses who struggle less publicly with similar issues.

Advance directives are intended to help caregivers avoid conflicts, but in any case, honest conversation is needed long before a crisis occurs (Sabatino, 2010). Dying is hard to talk about, much less accept. Thanatologists wish it were otherwise.