12.3 Facing Death

What are practices related to death and dying?

In this section, we’ll turn our attention from the process of dying to the actual death of the individual. We’ll examine various ways in which deliberate death can occur, along with the supportive practices available for those who are dying. We will also take a closer look at the cultural and legal implications of end-of-life practices.

Advanced Care Planning

Advanced care planning refers to all documents related to end-of-life care, including advance directives and medical orders.

Advance directives

An advance directive includes documents mentioning a health care agent and living wills initiated by the patient. They allow you to clearly communicate your personal healthcare wishes for times when you are unable to speak for yourself. As a legal document, it should be placed on file with your healthcare provider. Your advance directive provides information that will help your healthcare provider and loved ones know how to make decisions for you that match what matters most to you. This information can include:

• Person(s) you want to make your healthcare decisions for you
• Medical treatment you want or do not want
• How comfortable you want to be kept
• Instructions on life-sustaining treatments
• Organ donation wishes

Living wills are written or video statements that outline the health care that initiates the person’s wishes under certain circumstances.

A durable power of attorney for health care names the person who should make health care decisions in the event that the patient is incapacitated.

In contrast, medical orders are crafted by a medical professional on behalf of a seriously ill patient. Unlike advanced directives, as these are doctor’s orders, they must be followed by other medical personnel. Medical orders include Physician Orders for Life-sustaining Treatment (POLST), do-not-resuscitate, do-not-incubate, or do-not-hospitalize. In some instances, medical orders may be limited to the facility in which they were written. Several states have endorsed POLST so that they are applicable across healthcare settings (IOM, 2015).

Despite the fact that many Americans worry about the financial burden of end-of-life care, “more than one-quarter of all adults, including those aged 75 and older, have given little or no thought to their end-of-life wishes, and even fewer have captured those wishes in writing or through conversation” (IOM, 2015, p. 18).

Curative and Palliative Care

When individuals become ill, they need to make choices about the treatment they wish to receive. One’s age, type of illness, and personal beliefs about dying affect the type of treatment chosen (Bell, 2010).

Curative care is designed to overcome and cure disease and illness (Fox, 1997). Its aim is to promote complete recovery, not just to reduce symptoms or pain. An example of curative care would be chemotherapy. While curing illness and disease is an important goal of medicine, it is not its only goal. As a result, some have criticized the curative model as ignoring the other goals of medicine, including preventing illness, restoring functional capacity, relieving suffering, and caring for those who cannot be cured.

Palliative care focuses on providing comfort and relief from physical and emotional pain to patients throughout their illness, even while being treated (NIH, 2007). In the past, palliative care was confined to offering comfort for the dying. Now it is offered whenever patients suffer from chronic illnesses, such as cancer or heart disease (IOM, 2015). Palliative care is also part of hospice programs. It is an interdisciplinary approach to specialized medical and nursing care for people with life-limiting illnesses. It focuses on providing relief from the symptoms, pain, physical stress, and mental stress at any stage of illness, with the goal of improving the quality of life for both the person and their family. Doctors who specialize in palliative care have had training tailored to helping patients and their family members cope with the reality of impending death and make plans for what will happen afterward (National Institute on Aging, 2019).

Palliative care is provided by a team of physicians, nurses, physiotherapists, occupational therapists, speech-language pathologists, and other health professionals who work together with the primary care physician and refer specialists or other hospital or hospice staff to provide additional support to the patient. It is appropriate at any age and at any stage in a serious illness and can be provided as the main goal of care or along with curative treatment. Although it is an important part of end-of-life care, it is not limited to that stage. Palliative care can be provided across multiple settings, including in hospitals, at home, as part of community palliative care programs, and in skilled nursing facilities. Interdisciplinary palliative care teams work with people and their families to clarify goals of care and provide symptom management, psychosocial, and spiritual support.

Hospice Care

Hospice emerged in the United Kingdom in the mid-20th century as a result of the work of Cicely Saunders. This approach became popularized in the U.S. by the work of Elizabeth Kübler-Ross (IOM, 2015), and by 2012, there were 5,500 hospice programs in the U.S. (National Hospice and Palliative Care Organization (NHPCO), 2013).

Hospice care, whether at home, in a hospital, nursing home, or hospice facility, involves a team of professionals and volunteers who provide terminally ill patients with medical, psychological, and spiritual support, along with support for their families (Shannon, 2006). The aim of hospice is to help the dying be as free from pain as possible and to comfort both the patients and their families during a difficult time.

In order to enter hospice, a patient must be diagnosed as terminally ill with an anticipated death within 6 months (IOM, 2015). The patient is allowed to go through the dying process without invasive treatments. Hospice workers try to inform the family of what to expect and reassure them that much of what they see is a normal part of the dying process.

In many other countries, no distinction is made between palliative care and hospice, but in the United States, the terms have different meanings and usages. They both share similar goals of providing symptom relief and pain management, but hospice care is a type of care involving palliation without curative intent. Usually, it is used for people with no further options for curing their disease or for people who have decided not to pursue further options that are arduous, likely to cause more symptoms, and not likely to succeed. The biggest difference between hospice and palliative care is the type of illness people have, where they are in their illness, especially related to prognosis and their goals/wishes regarding curative treatment. Hospice care under the Medicare Hospice Benefit requires that two physicians certify that a person has less than six months to live if the disease follows its usual course. This does not mean, though, that if a person is still living after six months in hospice, he or she will be discharged from the service.

Hospice care involves caring for dying patients by helping them be as free from pain as possible, providing them with assistance to complete wills and other arrangements for their survivors, giving them social support through the psychological stages of loss, and helping family members cope with the dying process, grief, and bereavement. It focuses on five topics: communication, collaboration, compassionate caring, comfort, and cultural (spiritual) care. Most hospice care does not include medical treatment of disease or resuscitation, although some programs administer curative care as well. The patient is allowed to go through the dying process without invasive treatments. Family members who have agreed to put their loved one on hospice may become anxious when the patient begins to experience death. They may believe that feeding or breathing tubes will sustain life and want to change their decision. Hospice workers try to inform the family of what to expect and reassure them that much of what they see is a normal part of the dying process.

According to the National Hospice and Palliative Care Organization (2019), there are four types of hospice care in America:

• Routine hospice care, where the patient has chosen to receive hospice care at home, is the most common form of hospice.
• Continuous home care is predominantly nursing care, with caregivers and hospice aides supplementing this care to manage pain and acute symptom crises for 8 to 24 hours in the home.
• Inpatient respite care is provided by a hospital, hospice, or long-term care facility to provide temporary relief for family caregivers.
• General inpatient care is provided by a hospital, hospice, or long-term care facility when pain and acute symptom management can on be handled in other settings.

In 2017, an estimated 1.5 million people residing in America received hospice care (NHPCO, 2019). The majority of patients on hospice were patients suffering from dementia, heart disease, or cancer and typically did not enter hospice until the last few weeks prior to death. Almost one out of three patients were in hospice for less than a week.

According to Shannon (2006), the basic elements of hospice include:

• Care of the patient and family as a single unit
• Pain and symptom management for the patient
• Having access to day and night care
• Coordination of all medical services
• Social work, counseling, and pastoral services
• Bereavement counseling for the family up to one year after the patient’s death

Hospice Care in Practice

The early established hospices were independently operated and dedicated to giving patients as much control over their own death process as possible. Today, it is estimated that over 40 million individuals require palliative care, with over 78% of them being of low-income status or living in low-income countries (World Health Organization, 2019).  It is also estimated, however, that less than 14% of these individuals receive it. This gap is created by restrictive regulatory laws regarding controlled substance medications for pain management, as well as a general lack of adequate training in regard to palliative care within the health professional community.

Although hospice care has become more widespread, these new programs are subject to more rigorous insurance guidelines that dictate the types and amounts of medications used, length of stay, and types of patients who are eligible to receive hospice care (Weitz, 2007). Thus, more patients are being served, but providers have less control over the services they provide, and lengths of stay are more limited. In addition, a recent report by the Office of the Inspector General at the U.S. Department of Health and Human Services (2018) highlighted some of the vulnerabilities of the hospice system in the U.S. Among the concerns raised were that hospices did not always provide the care that was needed, and sometimes, the quality of that care was poor, even at Medicare-certified facilities.

The majority of patients in hospice are cancer patients, and they typically do not enter hospice until the last few weeks prior to death. The average length of stay is less than 30 days, and many patients are in hospice for less than a week (World Health Organization, 2019). Medications are rubbed into the skin or given in drop form under the tongue to relieve the discomfort of swallowing pills or receiving injections. A hospice care team includes a chaplain, nurses, and grief counselors who assist with spiritual and physical needs. When hospice is administered at home, family members may also be part, and sometimes the biggest part, of the care team. Certainly, being in familiar surroundings is preferable to dying in an unfamiliar place. But about 60 to 70 percent of people die in hospitals, and another 16 percent die in institutions such as nursing homes. Most hospice programs serve people over 65; few programs are available for terminally ill children.

Hospice care focuses on alleviating physical pain and providing spiritual guidance. Those suffering from Alzheimer’s also experience intellectual pain and frustration as they lose their ability to remember and recognize others. Depression, anger, and frustration are elements of emotional pain, and family members can have tensions that a social worker or clergy member may be able to help resolve. Many patients are concerned with the financial burden their care will create for family members. Bureaucratic pain is also suffered while trying to submit bills and get information about health care benefits or to complete requirements for other legal matters. Hospice care teams can address all of these concerns.

Not all racial and ethnic groups feel the same way about hospice care. African-American families may believe that medical treatment should be pursued on behalf of an ill relative as long as possible and that only God can decide when a person dies. Chinese-American families may feel very uncomfortable discussing issues of death or being near the deceased family member’s body. The view that hospice care should always be used is not held by everyone, and healthcare providers need to be sensitive to the wishes and beliefs of those they serve (Coolen, 2012). Similarly, the population of individuals using hospice services is not divided evenly by race. Approximately 81% of hospice patients are White, while 8.7% are African American, 8.7% are multiracial, 1.9% are Pacific Islander, and only 0.2% are Native American (Campbell et al., 2014).

Family Care

According to the Institute of Medicine (2015), it is estimated that 66 million Americans, or 29% of the adult population, are caregivers for someone who is dying or chronically ill. Two-thirds of these caregivers are women. This care takes its toll physically, emotionally, and financially. Family caregivers may face the physical challenges of lifting, dressing, feeding, bathing, and transporting a dying or ill family member. They may worry about whether they are performing all tasks safely and properly as they receive little training or guidance. Such caregiving tasks may also interfere with their ability to take care of themselves and meet other family and workplace obligations. Financially, families may face high out-of-pocket expenses (IOM, 2015).

As can be seen in Table 10.6, most family caregivers are providing care by themselves with little professional intervention, are employed, and have provided care for more than 3 years. The annual loss of productivity in the U.S. was $25 billion in 2013 as a result of work absenteeism due to providing this care. As the prevalence of chronic disease rises, the need for family caregivers is growing. Unfortunately, the number of potential family caregivers is declining as the large baby boomer generation enters into late adulthood (Redfoot, Feinberg, & Houser, 2013).

Table 2. Characteristics of Family Caregivers in the United States adapted from IOM, 2015

Euthanasia and Physician-Assisted Suicide

Euthanasia, or helping a person fulfill their wish to die, can happen in two ways: voluntary euthanasia and physician-assisted suicide. Voluntary euthanasia refers to helping someone fulfill their wish to die by acting in such a way as to help that person’s life end. This can be passive euthanasia, such as no longer feeding someone or giving them food. Or it can be active euthanasia, such as administering a lethal dose of medication to someone who wishes to die. In some cases, a dying individual who is in pain or constant discomfort will ask this of a friend or family member as a way to speed up what he or she has already accepted as being inevitable. This can have lasting effects on the individual, or individuals asked to help, including but not limited to prolonged (Meier et al., 2009).

Physician-Assisted Suicide: Physician-assisted suicide occurs when a physician prescribes the means by which a person can end his or her own life. This differs from euthanasia in that it is mandated by a set of laws and is backed by legal authority. Physician-assisted suicide is legal in the District of Columbia and several states, including Oregon, Hawaii, Vermont, and Washington. It is also legal in the Netherlands, Switzerland, and Belgium.

The specific laws that govern the practice of physician-assisted suicide vary between states. Oregon, Vermont, and Washington, for example, require the prescription to come from either a Doctor of Medicine (M.D.) or a Doctor of Osteopathy (D.O.) (Theil-Reiter et al., 2018). These state laws also include a clause about the designated medical practitioner being willing to participate in this act. In Colorado, terminally ill individuals have the option to request and self-administer life-ending medication if their medical prognosis gives them six months or less to live. In the District of Columbia and Hawaii, the individual is required to make two requests within predefined periods of time and also complete a waiting period, and, in some cases, undergo additional evaluations before the medication can be provided.

A growing number of the population support physician-assisted suicide. In 2000, a ruling of the U.S. Supreme Court upheld the right of states to determine their laws on physician-assisted suicide despite efforts to limit physicians’ ability to prescribe barbiturates and opiates for their patients requesting the means to end their lives. The position of the Supreme Court is that the debate concerning the morals and ethics surrounding the right to die is one that should be continued. As an increasing number of the population enters late adulthood, the emphasis on giving patients an active voice in determining certain aspects of their own death is likely.

Cultural Differences in End-of-Life Decisions

According to Searight and Gafford (2005a), cultural factors strongly influence how doctors, other healthcare providers, and family members communicate bad news to patients, the expectations regarding who makes the healthcare decisions, and attitudes about end-of-life care. In the United States, doctors take the approach that patients should be told the truth about their health. Outside the United States and among certain racial and ethnic groups within the United States, doctors and family members may conceal the full nature of a terminal illness as revealing such information is viewed as potentially harmful to the patient or, at the very least, is seen as disrespectful and impolite. Holland et al. (1987) found that many doctors in Japan and in numerous African nations used terms such as “mass,” “growth,” and “unclean tissue” rather than referring to cancer when discussing the illness with patients and their families. Family members actively protect terminally ill patients from knowing about their illness in many Hispanic, Chinese, and Pakistani cultures. (Kaufert & Putsch, 1997; Herndon & Joyce, 2004).

In the United States, we view the patient as autonomous in health care decisions (Searight & Gafford, 2005a), while in other nations, the family or community plays the main role, or decisions are made primarily by medical professionals or the doctors in concert with the family make the decisions for the patient. For instance, in comparison to European Americans and African Americans, Koreans and Mexican Americans are more likely to view family members as decision-makers rather than just patients (Berger, 1998; Searight & Gafford, 2005a). In many Asian cultures, illness is viewed as a “family event”, not just something that impacts the individual patient. (Candib, 2002). Thus, there is an expectation that the family has a say in the health care decisions. As many cultures attribute high regard and respect for doctors, patients and families may defer some of the end-of-life decision-making to the medical professionals (Searight & Gafford, 2005b).

According to a Pew Research Center Survey (Lipka, 2014), while death may not be a comfortable topic to ponder, 37% of their survey respondents had given a great deal of thought about their end-of-life wishes, with 35% having put these in writing. Yet, over 25% had given no thought to this issue. Lipka (2014) also found that there were clear racial and ethnic differences in end-of-life wishes. Whites are more likely than Blacks and Hispanics to prefer to have treatment stopped if they have a terminal illness. While the majority of Blacks (61%) and Hispanics (55%) prefer that everything be done to keep them alive. Searight and Gafford (2005a) suggest that the low rate of completion of advanced directives among non-whites may reflect a distrust of the U.S. healthcare system as a result of the healthcare disparities non-whites have experienced. Among Hispanics, patients may also be reluctant to select a single family member to be responsible for end-of-life decisions out of a concern of isolating the person named and of offending other family members, as this is commonly seen as a “family responsibility” (Morrison et al., 1998).

Religious Practices After Death

Funeral rites are expressions of loss that reflect personal and cultural beliefs about the meaning of death and the afterlife. Ceremonies provide survivors with a sense of closure after a loss. These rites and ceremonies send the message that death is real and allow friends and loved ones to express their love and respect for those who die. Under circumstances in which a person has been lost and presumed dead or when family members were unable to attend a funeral, there can continue to be a lack of closure that makes it difficult to grieve and to learn to live with loss. Although many people are still in shock when they attend funerals, the ceremony still provides a marker of the beginning of a new period of one’s life as a survivor. The following are some of the religious practices regarding death; however, individual religious interpretations and practices may occur (Dresser & Wasserman, 2010; Schechter, 2009).

Hinduism. The Hindu belief in reincarnation accelerates the funeral ritual, and deceased Hindus are cremated as soon as possible. After being washed, the body is anointed, dressed, and then placed on a stand decorated with flowers ready for cremation. Once the body has been cremated, the ashes are collected and, if possible, dispersed in one of India’s holy rivers.

Judaism. Among the Orthodox, the deceased is first washed and then wrapped in a simple white shroud. Males are also wrapped in their prayer shawls. Once shrouded, the body is placed into a plain wooden coffin. The burial must occur as soon as possible after death, and a simple service consisting of prayers and a eulogy is given. After burial, the family members typically gather in one home, often that of the deceased, and receive visitors. This is referred to as “sitting shiva.”

Muslim. In Islam, the deceased are buried as soon as possible, and the community is required to be involved in the ritual. The individual is first washed and then wrapped in a plain white shroud called a kaftan. Next, funeral prayers are said, followed by the burial. The shrouded dead are placed directly in the earth without a casket and deep enough not to be disturbed. They are also positioned in the earth, on their right side, facing Mecca, Saudi Arabia.

Roman Catholic. Before death, an ill Catholic individual is anointed by a priest, commonly referred to as the Anointing of the Sick. The priest recites a prayer and applies consecrated oil to the forehead and hands of the ill person. The individual also takes a final communion consisting of consecrated bread and wine. The funeral rites consist of three parts. First is the wake that usually occurs in a funeral parlor. The body is present, and family and friends offer prayers and eulogies. The funeral mass is next which includes an opening prayer, bible readings, liturgy, communion, and a concluding rite. The funeral then moves to the cemetery, where a blessing of the grave, scripture reading, and prayers conclude the funeral ritual.

Green Burial. In 2017, the median cost of an adult funeral with viewing and burial was $8,775. The median cost for viewing and cremation was $6,260 (National Funeral Directors Association (NFDA), 2019). The same NFDA survey found that nearly half of all respondents had attended a funeral in a non-traditional setting, such as an outdoor setting that was meaningful to the deceased, and over half of the respondents said they would be interested in exploring green funeral options (NFDA, 2017).

According to the Green Burial Council (GBC) (2019), Americans bury over 64 thousand tons of steel, 17 thousand tons of copper and bronze, 1.6 million tons of concrete, 20 million feet of wood, and over 4 million gallons of embalming fluid every year. As a result, there has been a growing interest in green or natural burials. Green burials attempt to reduce the impact on the environment at every stage of the funeral. This can include using recycled paper, biodegradable caskets, cotton shrouds in the place of any casket, formaldehyde-free, no embalming, and trying to maintain the natural environment around the burial site (GBC, 2019). According to the NFDA (2017), many cemeteries have reported that consumers are requesting green burial options, and since many of the add-ons of a traditional burial, such as a concrete vault, embalming, and casket are not required, the cost can be substantially less.

Conclusion

Death is something we all must face at some point. It occurs on physiological, psychological, and social levels, each of which has unique implications for the dying individuals and those close to them. Physiological death occurs as the body ceases to function, eventually rendering the individual unable to engage in basic necessary processes, such as breathing and eating. Psychological death occurs when the individual begins to face his or her impending death and consequently regresses into the self. Societal death occurs when others withdraw from the individual, perhaps unable to effectively cope with the impending loss and its implications. In some cases, palliative care or hospice services are utilized to assist both the dying individual and his or her family throughout the dying process. These services include care for the dying individual, as well as support for the family. In addition, several states allow terminally ill or dying individuals to utilize physician-assisted suicide, in which a medical practitioner prescribes and/or administers life-ending medication at the individual’s request. The utilization of palliative or hospice care services, as well as physician-assisted suicide, vary between individuals, cultures, and racial groups, ultimately reflecting the legal, ethical, and moral complexity of both types of practices.

The way in which we view death, talk about it, prepare for it, and what we do when it happens vary both within and between cultures. Coping with the grief that is associated with death and loss is a complex but necessary process, with a number of strategies for working through the situation in a healthy and positive way. Several theories have been created to explain how grieving happens, some including stages of grief that the individual experiences, others including tasks that the individual must complete. These stages and tasks on their own are neutral, with the potential to facilitate positive coping, but can also become maladaptive if the individual does not work through them in a healthy way. Death is ultimately the end of lifespan development, an occurrence that takes place for everyone at some time.  It is the culmination of the other stages of development, many of which play a role in shaping how the individual handles death when the time comes, both for the self and for loved ones.

Additional Supplemental Resources

Websites

• National Alliance for Grieving Children
  • The NAGC is a nationwide network comprised of professionals, institutions, and volunteers who promote best practices, educational programming, and critical resources to facilitate the mental, emotional and physical health of grieving children and their families.

Videos

• Why I became a death doula: “Planning for our death is a powerful way to understand what choices to make in life,” suggests death doula Alua Arthur. By guiding people to define their vision of their death, Alua nurtures her clients’ innate strengths and vulnerabilities so they may gain insight into how they want to live, love, and be remembered. A healer to the core, Alua offers a joyful peek into ways we might embrace the quirkiness and wonder of our own unique place in the world.

• The Brittany Maynard Story
  • In October 2014, 29-year-old Brittany Maynard told the world she planned to die gently with dignity before brain cancer completely destroyed her body and mind.
• The Science of Aging
  • Why do we age from a biological perspective?
• Being Mortal (full film) | FRONTLINE
  • How do you talk about death with a dying loved one? Dr. Atul Gawande explores death, dying, and why even doctors struggle to discuss being mortal with patients in this Emmy-nominated documentary.
• Age & Aging: Crash Course
  • People are getting older – not just in the individual sense, but the human population itself. Today we’re going to explore those shifting patterns and their implications. We’ll go over the biological, psychological, and cultural aspects of aging, including some of the particular challenges that older
• What Makes a Good Life? Lessons from the Longest Study on Happiness
  • What keeps us happy and healthy as we go through life? If you think it’s fame and money, you’re not alone – but, according to psychiatrist Robert Waldinger, you’re mistaken. As the director of a 75-year-old study on adult development, Waldinger has unprecedented access to data on true happiness and satisfaction. In this talk, he shares three important lessons learned from the study as well as some practical, old-as-the-hills wisdom on how to build a fulfilling, long life.
• Brené Brown on Empathy
  • What is the best way to ease someone’s pain and suffering? In this beautifully animated RSA Short, Dr. Brené Brown reminds us that we can only create a genuine empathic connection if we are brave enough to really confront our own fragilities.
• We don’t “move on” from grief. We move forward with it | Nora McInerny
  • In a talk that’s by turns heartbreaking and hilarious, writer and podcaster Nora McInerny shares her hard-earned wisdom about life and death. Her candid approach to something that will, let’s face it, affect us all is as liberating as it is gut-wrenching. Most powerfully, she encourages us to shift how we approach grief. “A grieving person is going to laugh again and smile again,” she says. “They’re going to move forward. But that doesn’t mean that they’ve moved on.

Attributions

Human Growth and Development by Ryan Newton is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License,

Individual and Family Development, Health, and Well-being by Diana Lang, Nick Cone; Laura Overstreet, Stephanie Loalada; Suzanne Valentine-French, Martha Lally; Julie Lazzara, and Jamie Skow is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License,

Human Development by Human Development Teaching & Learning Group under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License,

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