Hospice care is likely to be most in line with views on death and dying held by

Hospice is a concept and a program of care that is specifically designed to minimize suffering for dying people and their family members. In the United States, hospice is the only widely available comprehensive program to support very sick people where they live. Hospice programs forgo most diagnostic testing and life-prolonging treatments in favor of symptom relief. They also educate dying people and family members about appropriate care and comfort care. Although hospice programs do not emphasize prolonging life, good hospice care may well prolong life a little bit, perhaps by avoiding the serious potential side effects of surgery and aggressive drug treatments that people might otherwise receive.

• Hospice programs focus on symptom relief, comfort care, and emotional support for the patient and family.

• Hospice programs do not emphasize diagnostic testing, finding a cure, or prolonging life.

In typical hospice care, a family member, a close friend, or both help make decisions for the seriously ill person when he or she is no longer competent or capable. The hospice staff usually visits the person as much as the person needs, as often as daily, and someone is available on call around the clock. Hospice personnel are specially trained to help manage symptoms and provide emotional and spiritual support and hands-on health care.

Hospice always involves different types of professionals, such as doctors, nurses, social workers, attendants (for example, home health aides), and, if needed, speech, physical, and occupational therapists. Pharmacists, nutritionists, and other therapists may also be involved.

Hospice program personnel care for people at home or in nursing homes. Although hospice program personnel do not usually care for people in hospitals and rehabilitation centers, many hospitals are establishing care programs that treat symptoms fully and help with decision making (palliative care services) to address the same care issues.

Hospice programs differ from each other in the services they readily provide and in treatments and devices they support and use. Whether hospice care serves a particular person and family best depends on their needs and wishes, on financial considerations, and on the skills and capacity of the local programs.

Hospice care can provide most necessary medical treatments, and doctors stay involved. Nurses ordinarily oversee the general plan of care, including drug use, oxygen therapy, and intravenous lines or other special equipment. Social workers, chaplains, and trained volunteers help address interpersonal, spiritual, and financial issues. Bereavement counselors provide support and insight during the grieving process. Hospice plans of care help family members prepare for the challenges of facing the death of a loved one and dealing with the situation at the time of death, including their roles and how to obtain needed help.

Most people ill enough to require hospice also require some assistance with daily activities (for example, dressing, bathing, and preparing food), and some may be completely dependent. Family members and friends often provide this care, and the hospice or the family can provide additional paid help from home health aides.

Medicare or insurance typically pays for hospice services, but usually only after a doctor certifies that the person has a fatal disorder and is expected to live less than 6 months. People are still covered by their regular medical insurance for conditions unrelated to the hospice diagnosis. Hospice care may be discontinued at any time, for example, if the person's health improves or the person wishes to try a promising treatment for the underlying condition.

The following English-language resources may be useful. Please note that THE MANUAL is not responsible for the content of these resources.

• Compassionandchoices.org: Provides end-of-life planning tools and information about end-of-life care advocacy

• Medicare: Hospice Compare: Provides a search tool to find and compare hospice agencies serving a specific area

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Highlights

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Recording preferred place of death is a common metric of end of life care quality.

What is an appropriate place is often defined in a static, ‘geographical’ way.

Palliative care teams do ‘placing work’: making places suitable for dying.

This work is resolutely ongoing, and a significant feature of the care given.

The concept highlights the distributed nature of making place for care and dying.

Abstract

Over the last decade, policies in both the UK and many other countries have promoted the opportunity for patients at the end of life to be able to choose where to die. Central to this is the expectation that in most instances people would prefer to die at home, where they are more likely to feel most comfortable and less medicalised. In so doing, recording the preferred place of death and reducing the number of hospital deaths have become common measures of the overall quality of end of life care. We argue that as a consequence, what constitutes a desired or appropriate place is routinely defined in a very simple and static ‘geographical’ way, that is linked to conceptualising death as an unambiguous and discrete event that happens at a precise moment in time in a specific location.

In contrast, we draw on 18 months of ethnographic fieldwork with two inner-London palliative care teams to describe the continual work staff do to make places suitable and appropriate for the processes of dying, rather than for a singular event. In this way, instead of ‘place of death’ merely defined in geographic terms, the palliative care staff attend to the much more dynamic relation between a patient and their location as they approach the end of their life. Central to this is an emphasis on dying as an open-ended process, and correspondingly place as a social space that reflects, and interacts with, living persons. We propose the term ‘placing work’ to capture these ongoing efforts as a patient's surroundings are continually altered and adjusted over time, and as a way to acknowledge this as a significant feature of the care given.

Keywords

Place

Placing work

End-of-life care

Palliative care

Dying

Death

Home

United Kingdom

© 2021 The Authors. Published by Elsevier Ltd.