Pallative Care

“You matter because you are you, and you matter to the end of your life. We will do all we can not only to help you die peacefully, but also to live until you die.”

- Cicely Saunders, pioneer in the hospice movement -

Palliative care is a team-based approach to care that focuses on improving the quality of life for people with serious or life-limiting conditions and their care partners and loved ones. Bereavement care is provided through culturally sensitive treatment of pain and physical, psychosocial, and spiritual problems. Palliative care is appropriate at any age and stage of a serious illness, can be provided along with curative treatment, and is not dependent on prognosis.

End-of-life or hospice care, which is frequently associated with the Hospice Medicare Benefit in the United States, focuses on palliative care for terminally ill individuals who may have only a limited time to live and have chosen not to pursue curative treatment for their underlying disease. The nature of death and dying has changed over the twentieth century, with a 2005 CDC study finding that most deaths and dying occurring in institutions rather than at home.

Death has become increasingly common as a result of advanced serious illness that must be managed for weeks, if not years. Diseases have stages and progress with multiple health, functional, and emotional changes occurring throughout the disease process. Individuals with advanced serious illness, must deal with multiple conditions that may interact in complex ways, as well as a care system that is frequently fragmented, uncoordinated, and confusing. Medical technology has advanced to the point where patients in hospitals rarely die without a decision to withhold or withdraw life-sustaining therapy, however those decisions are psychologically difficult for all parties involved, particularly in the absence of advance directives. End-of-life decisions are complex, involving ethics, religion, medicine, psychology, sociology, economics, the law, public policy, and other fields.

Why is there such a stigma around death and the end-of-life process in the United States? We don’t talk about death much, even during the height of the pandemic. We don’t celebrate it culturally speaking, as Latin American cultures do. We don’t worship our ancestors as do some cultures. We forbid dead bodies from being shown on the news. Death is medicalized, people die in hospitals and facilities even though most wish to die at home. By avoiding talking about it or seeing it, do we hope to avoid it altogether? So why don’t we talk about death?

Death Happens Less: The strange thing about our modern relationship with death is that it is a byproduct of a truly amazing human story. Simply put, there is less death. In 1900, the average lifespan was 32 years. In 2020, the average lifespan is around 72 years. It was made possible by amazing breakthroughs (think the polio vaccine & aspirin) and mundane fixes won through collective action (such as municipal sewer systems and water chlorination). In addition to more than doubling our collective life-span, we have gotten very good at keeping children alive, normalizing children surviving into adulthood.

In 1900, children under the age of five accounted for 30% of all American deaths; a century later, the figure was 1.4%. Children who used to die right away are now routinely saved. Mothers are being saved too - childbirth used to terminate mothers with alarming frequency. Good statistics are hard to find on the subject, but around 900 mothers died for every 100,000 births in Sweden in the 1800’s, and today only about 8 women die for every 100,000 births. Disease wasn't a lengthy process through much of human history; it was a swift end - because medical science couldn't help you.

Even the medical interventions available meant that you would die quickly — it turns out that mercury was a go-to medicine, and the cure-all for any ailment was leeches sucking your blood. These medicinal remedies actually hindered the body’s ability to fight infections, diseases and other ailments. The lack of hygiene may have killed more people than we will ever know. In certain times in human history, you were more likely to die under a doctor’s care, because of the absolute lack of, well, medical knowledge. For example, doctors would routinely use the same tools to do surgeries as they had just utilized to cut into cadavers, making sepsis all but an inevitability.

Medicine’s Great War with Death: Disease is concept that we want to be able to directly confront. Our language around disease and death reflects that. We often call virus’s an “invisible enemy”. We do not treat cancer; rather, we fight it. We don't want to end heart disease; we've declared war on it. When popular medical shows such as Grey's Anatomy portray resuscitation techniques such as CPR, doctors often scream to their unconscious patient “to not to give up” or to “fight”.

This language of fighting vs surrendering spills over into palliative care, as many see it as “giving up” the fight against death. However, palliative care is simply a branch of medicine that focuses on symptom relief. Palliative care is available at any stage of a disease, not just at the end. Hospice care is a type of palliative care that is available to people who have six months or less to live. This usually, but not always, means the patient has stopped aggressive treatment so that their doctor's team can focus on managing their symptoms effectively. Palliative care physicians are consultative; that is, they usually work as part of a team of physicians and begin by asking questions.

It's amazing how significantly better outcomes can be achieved when palliative care is included at the end of life. This often means that terminally ill patients are happier, more mobile, in less pain, and they also tend to live longer. This makes sense when we realize how much our psychological state affects our mortality. Those who are depressed have a shorter life-span. One Canadian study found that those with depression lived 10 - 12 years less (depending on gender) than those without depression. This is a huge life-span difference, but temporary depression brought on by personal grief (the loss of a spouse perhaps), or a reduction in the quality of life can have similar effects.

This is why palliative care is so important, as it focuses on quality of life. Also, this type of care is also available anywhere, including your own home, which is where most people prefer to spend their final days. It's important to understand this information because doctors are often hesitant to tell people they're dying, let alone recommend palliative or hospice care. This makes sense when you remember that it’s a doctor’s mission to heal the sick, and it can be frustrating to realize you have reached the limitations of your ability to heal, cure, and otherwise extend life.

When Death Happens, We Don’t See It: Existing research on death and dying in modern society frequently includes the observation that death has become invisible, and dying people are stigmatized and avoided socially. Lack of contact with a dying person may promote negative perceptions of the dying, which may lead to further avoidance of them. One study, conducted by Youngjin Kang, published in the Journal of Social Work in End-of-Life & Palliative Care, found that only a small number of U.S. participants had frequent social contact with a dying individual outside of their family, and they shared several common negative perceptions of the dying.

In 2014, 37.3% of patients died in hospitals, 23% died in nursing homes or long-term care facilities, and 29% died at home. In 2016, 48% of all Medicare patients received some form of hospice care, but approximately 28% of patients were only enrolled in hospice for 1 to 7 days. Furthermore, the national average for ICU mortality in 2014 was 14.7%, with individual state averages reaching as high as 21.6%. Taken together, these findings indicate that the vast majority of patients have highly medicalized deaths, which is the polar opposite of what most patients prefer. In fact, roughly 80% of Americans say they would prefer to die at home.

Because loved ones die in hospitals and bodies are prepared by third parties, most families are not intimately involved in the dying process. Memorial services are usually private, invite-only affairs intended for the closest of friends and family, not for the community at large. Hospitals have strict and restrictive visitor policies, and Covid-19 made in-person interaction nearly impossible. Even before the pandemic, death and the dying process was medicalized and separated from social and family life. American society routinely separates even the healthy elderly population, consigning them to retirement homes, 55+ communities, and nursing or hospice facilities as the end grows nearer.

Multi-generational households are not common. Other cultures have societal celebrations for the dead, such as “Day of the Dead” in Latin American cultures, but the United States only has Halloween - focused on children and candy - the opposite of any conversation about death and the dead. Many other cultures practice ancestor worship - but in America, the “self-made man” is still revered above all else.

Hidden Grief: Dr. Kenneth Doka pioneered the concept of "disenfranchised grief" - giving a name to the reality in which mourners believe they do not have the right to express their loss openly or fully. This can often be due to cultural stigma surrounding how the person died. For example, those mourning the death of a loved one by suicide or drug overdose may frequently feel that others are judging the deceased’ choices and behaviors, or the actions taken (or not taken) by those who are grieving. Doka says that disenfranchised grief is “a loss that is not or cannot be openly acknowledged, socially sanctioned, or publicly mourned.” It is known as “hidden grief or sorrow.” There are five different kinds of disenfranchised grief.

The first is when the relationship is not recognized. Ex-spouses might fall into this category. What happens, for example, if the person you're having an affair with dies? What if you are a stepchild? Your grief might be seen as less valid than blood-relations.

Then there are cases where the loss itself is not recognized, such as when a person is grieving after a divorce. Not all grief involves literal death, as death is a final separation. Any kind of separation is cause for grief, but our society is not built to acknowledge losses that aren’t directly related to death.

The third type of disenfranchised grief occurs when the griever is not acknowledged. The bereaved person may have developmental disabilities, be very old or very young. Their sense of loss is frequently overlooked because people believe they don't understand what's going on. Children often fall into this category. Adults sometimes hide all or part of the truth, or don’t fully go into detail with the child, under the assumption that there is a lack of understanding, or that discussion of the death would scar them further.

There are instances where a stigma was attached to the death, such as with suicide or addiction. People do not seek help in these situations because they are embarrassed. For example, one woman whom Doka interviewed had a son who died after being shot during a robbery — and he was the robber. When she told people her son was killed in a robbery, they would say, "I hope they got that bastard." She was at a loss for words because he was "that bastard."

In the fifth category of disenfranchised grief, the person's grief process does not conform to societal norms. For example, in some cultures, grief is expressive and mourners literally wail, loudly and openly. Some people can become embarrassed because it is not the dominant cultural norm, but each culture has different ways of expressing grief. Someone could also be stigmatized for the exact opposite, showing too much control of emotions and having other mourners feel they are uncaring or cold. However, it is not uncommon for grieving people to shut down emotionally, compartmentalize, or feel they have to “hold it together” - often for the sake of others such as children or because they need a level head to deal with mundane details like the funeral or estate.

Although there is a stigma about death and end of life, there are ways our society is working on overcoming it. Covid-19 forced people to consider death more, and the extreme isolation that covid victims and families alike have reopened a conversation about connecting around the end of life and dying process. Let's Have Dinner and Talk About Death is an interesting project in which people... have dinner and talk about death. But, more importantly, the program gives the conversation a structure with specific questions, needs, and recommendations. It all started with a University of Washington graduate course, taught by Michael Hebb and Scott Macklin, which quickly grew. On August 24, 2013, Death Over Dinner was launched, and in a single night over 500 dinners in 20 countries were held. Since then, there have been over a hundred thousand #deathdinners around the globe. Going to the website will walk you through the process of planning your own Dinner.

Humans had little control over the timing and manner of their deaths before antibiotics, cardiopulmonary resuscitation (CPR), and life-sustaining technologies. Today, the medicalization of death has allowed patients to postpone death, extending both their living and dying lives. In an article published in the AMA Ethics Journal entitled “How Do Medicalization and Rescue Fantasy Prevent Healthy Dying?” Peter T. Hetzler III and Lydia S. Dugdale, MD, posit that technology, media influence, and medical professionals themselves have all contributed to the transformation of dying from a natural part of the human experience into a medical crisis from which a patient must be rescued. Dying patients have been removed from their homes and communities and transplanted in hospitals and institutions in an attempt to save them from death. Medicalization has allowed patients, their families, and physicians to postpone deat4h without necessarily promoting patients' health and healing. Medicalized death is not inherently bad. In general, the term could refer to anyone receiving any type of health care while dying. However, “delayed death” sometimes only means “prolonged suffering”, which begs the question - What is the proper place of medicalized dying within the context of medicine's goals?

What is the goal of medicine? The bioethicist Leon Kass proposes in a classic essay that the goal of medicine is to promote health, which he defines as "wholeness." "The English word health literally means 'wholeness,' and to heal means 'to make whole.... To be whole is to be healthy, and to be healthy is to be whole," he writes. However, health is more than just bodily health. In the 1970s, psychiatrist George Engel declared that a strictly biomedical view of the patient was inadequate. Instead, he proposed a new model of illness, the biopsychosocial model. Other scholars have since expanded on the model, advocating for a biopsychosociospiritual approach to medicine. The combination of 4 words - biological, psychological, sociological, and spiritual, acknowledges the fact that dying encompasses all 4 of these realms.

Why then, has American society focused so intently on only the biological part of wellness? It could be that since the dawn of the industrial revolution, western society has been fascinated with the role technology can play on extending life and conquering disease. As mentioned, we have been extremely successful in advancing medicine, and extending the longevity of human life. Yet our focus on material, measurable results overlook quality of life - which is extremely dependent on factors such as our social life, our mental health, our spiritual journey. We have compartmentalized these needs, considering them different realms. Yet the overlap is undeniable, and more needs to be done with cross-disciplinary work when it comes to meetings patient’s needs at the end of life.

A medicine that truly seeks health or wholeness, is one that strives for comprehensive, biopsychosociospiritual care of the patient. It addresses not only the physical but also the psychological, spiritual, and communal aspects. It frequently involves a multidisciplinary team. The application of aggressive life support to terminally ill patients can thwart this type of care. It can prevent the therapist, chaplain, or friends and family from engaging with the patient.

Rescue technology eliminates the possibility of a patient's intimacy with loved ones, as well as the possibility of the patient dying at home. The public frequently describes the role of physicians as "saving lives." It's no coincidence that this elevated portrayal of the physician's role exists, because the media frequently portrays doctors as lifesavers or rescuers, and numerous soap operas and long running shows feature medical professionals as the main source of their story-telling. Consider how cardiopulmonary resuscitation (CPR) has become romanticized. According to one study, the immediate survival rate for television CPR was around 70%, which is significantly higher than the actual immediate survival rate of 37%-61%. In actuality, only about a quarter of adult patients who are revived with CPR survive to be discharged from the hospital.

When disaster strikes, victims expect to be rescued, and death is no exception. Our moral response to the impending death requires us to save the doomed. We throw a rope to the drowning, rush into burning buildings to rescue the trapped, and send teams to find the snowbound. This “rescue ethic” pervades medical care. In the face of death, the imperative to rescue becomes a compulsion that overrides rationality. The utilitarian ethic of doing the most good for the greatest number of people breaks down, and physicians adopt a duty-based ethic of saving life at any cost.

Recently, philosopher Nancy Jecker claimed that the rule of rescue has no moral imperative and can even work against the principle of justice. She says, “One is trying something, but it is not rescue. A more honest telling might be: harming the patient, wasting resources, feeding false hope, disregarding professional standards, failing to show courage, being seduced by technology, neglecting to focus on palliative care, being coopted by the family, refusing to acknowledge medicine’s limits, denying a patient’s impending death. Characterizing the use of futile interventions as rescue, or attempted rescue, clouds our moral perception, making it difficult to identify the morally egregious features of what we are doing.”

Perhaps medicalized dying and the rescue fantasy are compatible with medicine - if medicine is oriented solely toward death control and indefinite life extension. However, this is not the case. Death prevention and postponement are not the goals of medicine; they are subordinate to it. The rule of rescue is a pervasive and insidious force that has drawn physicians into highly medicalized dying practices such as aggressive life-sustaining treatment in futile cases and physician aid in dying. However, by identifying and addressing the rescue fantasy, physicians can start to improve health by promoting wholeness, even at the end of life. They can address each component of the patient's experience near the end of life — biological, psychological, social, and spiritual — with the help of social workers and chaplains. By actively engaging with patients about death physicians may be able to bestow dignity on patients.

The Stigma Around Death & End of Life

“Healthy children will not fear life if their elders have integrity enough not to fear death.”

- Erik Erikson -

Physicians Fight Against Death

Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

- Dylan Thomas -

“Death is the wish of some, the relief of many, and the end of all”

- Lucius Annaeus Seneca -

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