Hospice Care

Jimmy Carter entered hospice care. The 98-year-old former president chose to spend his remaining time at home with family and receive hospice care instead of additional medical intervention.

On virtually the same date of the announcement, the Rand Corporation’s assessment of caregivers’ reports of hospice care experiences was published.

Welcome back. The roots of hospice care can be traced to Malta around 1065, where it was dedicated to caring for the ill and dying en route to and from the Holy Land. Hospices flourished in the Middle Ages but declined as religious orders dispersed. Still, its development continued in France, the U.K. and Australia.

The first modern hospice center was created in the U.K. in 1967 by Dame Cicely Saunders, a British registered nurse, who completed her medical degree in 1957. Saunders emphasized the patient rather than the disease, introducing the notion of total pain, which included psychological and spiritual as well as physical discomfort. 

Saunders presented her approach in tours of the U.S., and in 1967, opened St Christopher's Hospice in London. Florence Wald, dean of Yale School of Nursing, had heard Saunders speak and spent a month working with her before bringing the principles back to the U.S., establishing Hospice, Inc. in 1971.

U.S. Hospice Today
Hospice care is for those expected to live no more than six months, though it can be extended by the individual’s care team--physician, nurses, nurse assistants, social workers, chaplains and volunteers. The goal is not to cure the underlying disease, but to support the highest quality of life possible for whatever time remains.

Hospice elements (from https://hospicewise.org).

Most hospice care is provided at home, with a family member as the primary caregiver; however, hospice care is available at hospitals, nursing homes, assisted-living and hospice facilities, and even prisons.

Hospice has become a significant part of the U.S. health care system. In 1982, Congress initiated the creation of the Medicare Hospice Benefit, which became permanent in 1986. In 1993, President Clinton installed hospice as a guaranteed benefit and an accepted component of health care provisions. About half of Medicare recipients who died in 2020 received hospice services.

Medicare, Medicaid, the Department of Veterans Affairs and private insurance typically pay for hospice care. Each hospice program has its own payment policy, with services often based on need rather than the ability to pay.

The RAND Study
Although hospice in the U.S. began as a community-based, mainly volunteer service, by 2020, 73% of all hospices were for-profit. It’s been found that for-profit hospices provide care differently than not-for-profit hospices. For example, they generally employ fewer and less-skilled staff. The RAND study examined differences in reported quality of care.

The researchers assessed quality of hospice services by evaluating responses from the Consumer Assessment of Healthcare Providers and Systems Hospice Survey, a questionnaire completed by a hospice patient's primary caregiver after the patient has died. In all, they reviewed data from 653,208 respondents, reflecting care from 3107 hospices between April 2017 and March 2019, for a cross-sectional examination of hospice care by profit status.

They calculated scores across eight quality measures--hospice team communication, timely care, help for symptoms, respectful treatment, emotional and spiritual support, getting training to care for the hospice patient at home, overall rating of hospice care, and willingness to recommend the hospice to others--adjusting for case mix, including factors such as patient age and primary diagnosis.

Across all measures, a higher proportion of for-profit hospices were in the low performing category--31% scored 3 or more points below the national average of overall performance, 22% scored 3 or more points above the average; 12% of not-for-profit hospices scored 3 or more points below the average, 34% scored 3 or more points above the average. Those who received care from for-profit chains reported the worst care experiences.

Differences in reported hospice care experiences between for-profit and not-for-profit hospices after adjusting for hospice organizational characteristics (fig 2 from jamanetwork.com/journals/jamainternalmedicine/article-abstract/2801753).

Wrap Up
The researchers emphasize that, while a greater proportion of for-profit hospices performed worse than the national average, some for-profit hospices performed better than the average.

When choosing a hospice, families and health care professionals can look at the metrics available for hospices in their area on Medicare’s Care Compare website.

Thanks for stopping by.

P.S.
Hospice background
hospicefoundation.org/Hospice-Care/Hospice-Services
www.caringinfo.org/types-of-care/hospice-care/
www.mayoclinic.org/healthy-lifestyle/end-of-life/in-depth/hospice-care/art-20048050
en.wikipedia.org/wiki/Hospice
www.1800hospice.com/end-of-life-care/history-hospice/
Dame Cicely Saunders:
www.bmj.com/content/suppl/2005/07/18/331.7509.DC1
en.wikipedia.org/wiki/Cicely_Saunders

RAND hospice study in JAMA Internal Medicine: jamanetwork.com/journals/jamainternalmedicine/article-abstract/2801753
Articles on study:
www.eurekalert.org/news-releases/980767
www.news-medical.net/news/20230227/Greater-proportion-of-for-profit-hospices-perform-worse-than-not-for-profit-hospices.aspx
 

Study of Death’s Recalled Experiences

Welcome back. Five years ago, I wrote a blog post, Near-Death Experiences. It was all new to me but based on the literature I reviewed--and there was quite a bit--I concluded: the topic is one I’m no longer inclined to write off entirely as someone’s still active imagination.

Scene from Flatliners, a 1990 horror film in which medical students experiment with near-death experiences (Kiefer Sutherland, Kevin Bacon, Julia Roberts and Oliver Platt, with William Baldwin on the table.) (photo I used in Near-Death Experiences).

Well, it’s not just me. A multidisciplinary team of 18 leading researchers in neurosciences, critical care and resuscitation, psychiatry, psychology, social sciences and humanities examined the scientific evidence to date and published the first-ever, peer-reviewed consensus statement, Guidelines and Standards for the Study of Death and Recalled Experiences of Death. (see P.S. for researchers’ affiliations)

Why the Increased Interest?
First, realize that recalled experiences of death have been reported since antiquity.

Now, add the science. Advances in stem cell research, neuroscience and resuscitation science have enabled insights regarding the human brain in relation to death. Some 98% of people are declared dead by cardiopulmonary criteria. Brain cells, more resilient to the absence of oxygen than once assumed, become irreversibly damaged and “die” over hours to days postmortem.

Resuscitation has restored life to millions after their hearts had stopped. These survivors have consistently described a unique and specific set of cognitive recollections with seemingly universal themes and unexplained lucidity, consciousness, awareness and recall.

The Three-Part Consensus Statement

Part One, the introduction and purpose, notes that barriers to the scientific study of the recalled experience of death (RED) include a lack of an overall research framework, precise definitions and terminology, as well as validated measures to help distinguish REDs from other diverse human experiences.

The document aims to (1) describe current knowledge regarding death, consciousness and the RED, (2) propose an appropriate definition, terminology and research framework for the study of REDs and (3) identify knowledge gaps that will help standardize current research and lay the foundation for future work

Part Two presents a definition and terminology for RED, laying a framework for its study.

Although REDs were originally labeled near-death experiences (NDEs) in the
1970s, the term was not formally defined. Over the years, it has been used to refer to an assortment of unrelated human experiences, often with no relation to death, critical and life-threatening illnesses, or each other.

To distinguish REDs and authentic NDEs from other diverse human experiences, the researchers present a detailed flowchart and propose that death-related experiences include the following six components:

(1) a relation with death (a condition that would lead to death without life-saving interventions)
(2) a sense of transcendence (going beyond normal limits or boundaries)
(3) ineffability (cannot or should not be expressed in words)
(4) positive transformative effects (related to meaning and purpose to life)
(5) a severity of illness that leads to loss of consciousness
(6) the absence of features of other coma-related experiences (e.g., conventional dreams, delirium and delusions in the intensive care unit or elsewhere).

A RED is thus a cognitive and emotional experience during a loss of consciousness related to a life-threatening event. It comprises a specific narrative that can be broken into broad categories of themes (they list 51 with additional subthemes) in the following idealized steps:

Perceived death and separation from the body; Heading to a destination; Reliving a recording of life that is purposeful, meaningful and educational; Being “home” again; Returning back to life; then Reporting the effects.

Separation themes from 51 themes related to recalled experience of death (from nyaspubs.onlinelibrary.wiley.com/doi/10.1111/nyas.14740).

Part Three suggests areas for future research. These include identifying the underlying processes that relate to lucidity, despite the loss of visible signs of consciousness; systematic study into phenomena such as transcendence; and continued investigation into REDs.

Wrap Up
The researchers conclude that while understanding death and what happens when we die remain a mystery, this may now be a mystery that is amenable to unbiased and objective scientific scrutiny.

And I’m even less inclined to write off the topic as someone’s still active imagination. Thanks for stopping by.

P.S.
Consensus statement on recalled experiences of death in Annals of the NY Academy of Sciences journal: nyaspubs.onlinelibrary.wiley.com/doi/10.1111/nyas.14740
Article on study on EurekAlert! website: www.eurekalert.org/news-releases/948999

Affiliations of study researchers: New York University, Stony Brook Medical Center, Harvard, University of California, Riverside, Medical College of Wisconsin, University of Virginia, Mary Bird Perkins Terrebonne General Medical Cancer Center, New York Medical College, Baylor University, Virginia Commonwealth University and the UK’s University Hospital Southampton and King's College.

End-of-Life Caring

Comfort care is an essential part of medical care at the end of life…The goals are to prevent or relieve suffering as much as possible and to improve quality of life while respecting the dying person's wishes. (National Institute on Aging)
 

End-of-life care for the terminally ill
(photo from www.nia.nih.gov/).

Welcome back. Although I’m not yet dying or attending to someone who is, I came across two recent end-of-life studies you might find of interest. One focuses on the dying patient and family, the other addresses the surrogate who makes life-sustaining decisions for the patient.

The 3 Wishes Project
The 3 Wishes Project is an end-of-life program that seeks to bring peace to terminally ill patients and ease the grieving process.

The program involves implementing wishes identified by the patient, family, clinicians or project team in an effort to dignify the death and celebrate the life; humanize the dying process and create positive memories; and foster patient and family-centered end-of-life care while inspiring a deeper sense of vocation for clinicians.

The 3 Wishes Project began at St. Joseph's Healthcare Hamilton, an academic and research hospital affiliated with McMaster University and Mohawk College, in Hamilton, Ontario, Canada.

Can Project Sites be Added?
Researchers led by those with McMaster University conducted a study to determine if the program could be implemented by intensive care units of other hospitals.

Three additional hospitals participated, one each in Toronto, Vancouver and Los Angeles. Together with the Hamilton hospital, the study fulfilled 3,407 wishes for 730 dying patients.

The wishes, usually more than three per patient, included bringing personal items, pictures and pets from home, providing favorite music or spiritual support, connecting long lost family, celebrating weddings, watching a sporting event together with a favorite beverage, and a "date night" with local restaurant food.

3 Wishes Project--family, friends and staff get together in patient's room (photo from brighterworld.mcmaster.ca/articles/project-to-answer-last-wishes-spreads-successfully/).

Judging Success
The researchers assessed results using a mixed-methods formative evaluation, which entailed collecting, analyzing and integrating quantitative and qualitative data from 75 family members, 72 clinicians and 20 managers or hospital administrators.

Program value encompassed comforting families while inspiring compassionate clinical care. Transferability was promoted by family appreciation and the intensive care unit culture committed to dignity-conserving, end-of-life care. As for affordability, there was a required minimal investment for reusable materials, but the average cost per wish was just over $5.00 since most wishes cost nothing. Sustainability was demonstrated by each site continuing the program after the study.

Clinician and family perspectives on the 3 Wishes Project
(photo from 11-minute video youtu.be/CkWjlcl4BA4).

There seems no question that the 3 Wishes Project can and should be implemented at other tertiary care centers.

Religion, Spirituality and Surrogate Decisions
A team of investigators, led by a researcher with the Regenstrief Institute, set out to determine the relationships between religion and spirituality and the treatment decisions made by health care surrogates.

Decision-makers consent for Do-Not Resuscitate status
(from Patricia Bomba’s slides on “Medical decision-making
capacity: Legal, Ethical and Clinical Considerations”
slideplayer.com/slide/4174065/).

They enlisted 291 patients and their health care surrogates from three hospitals. The patients were age 65 or older and admitted to the intensive care services. The surrogates were predominately Protestant.

Baseline surveys completed between the second and tenth day assessed dimensions of religion and spirituality. Review of medical records and health information six months later identified life-sustaining treatments and hospice for patients who died.

Key Factors Influencing Surrogates
After adjusting for other religious dimensions, demographic and illness factors, the surrogates' belief in miracles was the only factor significantly associated with lower preference for do-not-resuscitate status--59% believed a miracle might save the patient.

Higher surrogate intrinsic religiosity (religion that is an end in itself) was associated with lower receipt of life-sustaining treatments during the patients’ final 30 days.

Together, belief in miracles and higher intrinsic religiosity were associated with lower hospice utilization.

To reduce effects on end-of-life treatment, the investigators recommend that chaplains or appropriately trained clinicians identify and explore surrogates’ belief in miracles and intrinsic religiosity.

Wrap Up
If you’re seeking end-of-life information, you’ll find an excellent series of articles on the National Institute on Aging’s website--providing care and comfort, palliative and hospice care, caring for a dying relative or someone with dementia, healthcare decisions, what happens when someone dies, what to do after someone dies and mourning the death of a spouse.

Thanks for stopping by.

P.S.
National Institute on Aging’s End of Life website: www.nia.nih.gov/health/end-of-life
3 Wishes Project website: 3wishesproject.com/
3 Wishes Project study in Annals of Internal Medicine: annals.org/aim/article-abstract/2755629/compassionate-end-life-care-mixed-methods-multisite-evaluation-3-wishes
Article on study on EurekAlert! website: www.eurekalert.org/pub_releases/2019-11/mu-pta110619.php
Surrogate decision maker study in Journal of Pain and Symptom Management: www.sciencedirect.com/science/article/abs/pii/S0885392419305263
Article on study on EurekAlert! website: www.eurekalert.org/pub_releases/2019-11/ri-fso110419.php