What makes end of life so important to long term care providers is the fact that of the around 2.5 million people who die each year in the United States, some 83 percent are Medicare beneficiaries, and a good number of those pass away in a facility setting. The American Association of Homes and Services for the Aging’s Institute for the Future of Aging Services says as many as 25 percent of all deaths occur in nursing facilities.
Hospice Need Growing
For providers, the intersection of hospice and palliative care and their own nursing facility services has grown in importance over the past decade as more and more residents receive hospice care, due to a number of factors that will be explored here. Outside of specific hospice care, research shows 20 to 25 percent of nursing facilities have end-of-life programs with staff trained to administer these efforts.
As with the day-to-day operations of nursing facilities, the way buildings look, the way administrators communicate with families, and the way care is tracked and given, there are major culture change issues happening with end-of-life care.
“Honoring the goal of patients rather than doing what a cookbook might say” is how James Avery, MD, senior vice president and chief medical officer for Golden Living and chairman of the American Health Care Association’s Quality Improvement Committee, describes the trend. He speaks of the “cookbook” as the purely medical options in caring for the dying, which may or may not be useful.
Experts see even more change coming as baby boomers age. The same transformation the boomer generation has prompted in other areas of the consumer economy will alter the way care for the dying is undertaken, with the sentiment of “we want what we want when we want it” taking hold.
The Trigger
Once a physician declares a resident of a nursing facility, or anyone for that matter, has a life expectancy of six months or less, then a referral to a hospice agency can occur, says Patti Scholten, RN, manager of home health and hospice for the Evangelical Lutheran Good Samaritan Society, a not-for-profit long term care provider with hospices in Minnesota, Iowa, and Arizona, among its other services.
From that point, and if the resident wants hospice, the long term care provider and hospice work together on a care plan. This coordination is vital to ensuring the wishes of each person receiving such care and ties into advance directives on how care is to be directed in the final months of life.
Most
hospice care is accomplished in the home, Scholten says, but wherever the care occurs, it is in a complementary role to the caregivers at home or in a nursing facility.
“Hospice supports caregivers,” she notes, adding that residents are getting quality care from a facility, but that a hospice team can focus on end-of-life issues while the day-to-day care continues. When hospice arrives in a facility, it is usually in the form a nurse assigned to tend to physical needs, a social worker, and possibly volunteers for aiding the basic needs of the resident when family cannot be there.
Social workers take on many roles, all depending on what an individual requires, be it emotional support, funeral and financial planning, or finalizing unfinished business on a personal level.
“It is all up to the individual,” Scholten says.
Avery recounts the time a woman sought peace with her dying father at one of his nursing facilities.
The man suffered from Alzheimer’s and caused no problems for staff; he was actually thought to be gentle and kind. The daughter, however, sought out the help of facility clergy to confront her anger toward a man she knew had been abusive to her and her brother when they were children.
The clergy had her direct this anger not at the man, but at an empty chair in a quiet room, representing the father. Eventually, the daughter worked out her anger and in the process confronted her own abusive ways with her own children. “But it got to the point of forgiveness, and she became nicer to him after this,” Avery says.
The ‘Good’ Death
Defining the best way to die is not an easy task, or even one most Americans want to ponder for more than a moment or two without getting depressed or distracted by the inevitability of it all.
Despite this aversion to looking at death and dying as the natural part of a lifespan, much thought has been given to the subject by caregivers, the medical community, providers, researchers, philosophers, and spiritual leaders into the way people ought to look at the issue. The results can be useful for providers to know when reviewing care plans for their own residents and designing programs for their staff and administration.
Judith Peres, a clinical social worker and independent consultant in hospice, nursing facility, and palliative end-of-life care policy, uses the “wave” theory to explain where society as a whole stands on the subject of dying. There is change going on out there now with how Americans treat death—the start of a beginning of a new era where more attention is being paid to the wishes of those dying, Peres says. This is being directed by law in some cases and by cultural practices in others, she notes.
An Institute of Medicine report from the late 1990s put the terms “
good death” and “bad death” into the health care lexicon. A good death was one free from avoidable distress and suffering for patients, families, and caregivers in accordance with patients’ and families’ wishes and consistent with clinical, cultural, and ethical standards.
The flip side, a bad death, is one that includes needless suffering, disregard for patient or family wishes or values, and a sense among participants that norms of decency have been offended.
Avery, who has a decades-long background in hospice, relates the story from a report in a medical journal that described the way one patient in an acute care hospital setting spent his final days.
“There was a case of an older man who ended up in a hospital for 50 days straight, nothing to eat or drink [because of medical concerns], who died delirious, in pain, tied to a bed,” he said, recounting how terrible this ordeal must have been for the man and his family.
Indignant at the plight of this unnamed man in the report, Avery says the medical model is a great thing to treat people and make them better, but when people end up in a skilled nursing-hospice situation, “the medical model doesn’t work.”
Hospice And Palliative
It is important to look at the difference between hospice and palliative care, experts say. Hospice is a philosophy of care that accepts death as the final stage of life. The goal of hospice is to enable patients to continue an alert, pain-free life and to manage other symptoms so that their last days may be spent with dignity and quality, surrounded by their loved ones.
Hospice affirms life and does not hasten or postpone death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care can be given in the patient’s home, a hospital, nursing facility, or private facility.
Palliative care, on the other hand, is not limited to hospice since hospice care is meant specifically for those approaching the last stages of life, while palliative care is appropriate for any stage of a serious illness.
The goal of palliative care is to relieve the pain, symptoms, and stress of serious illness—whatever the prognosis. It is appropriate for people of any age and at any point in an illness, and it can be delivered along with treatments that are meant to cure, according to getpalliativecare.org.
For long term care providers, the goals of palliative care are to maintain hope, preserve dignity, and answer the question of healing versus cure. Peres notes there is a growing focus on how much medicine is enough medicine.
Many hospice care programs added palliative care to their names to reflect the range of care and services they provide, as hospice care and palliative care share the same core values and philosophies, according to the National Hospice and Palliative Care Organization (NHPCO).
Defined by the World Health Organization in 1990, palliative care seeks to address not only physical pain, but also emotional, social, and spiritual pain to achieve the best possible quality of life for patients and their families.
To better serve individuals who have advanced or terminal illnesses and their families, many hospice programs encourage access to care earlier in the illness or disease process. Health care professionals who specialize in hospice and palliative care work closely with staff and volunteers to address all the symptoms of illness, with the aim of promoting comfort and dignity.
When And Why Hospice Care
The relationship between skilled nursing facilities (SNFs) and hospice providers, even when part of the same provider’s long term care offerings, has not always been an easy one. The situation has improved markedly in recent years, say providers, and part of the reason—beyond the common sense of collaboration for meeting the needs of residents—was a policy decision.
“Part of it was regulatorily driven when CMS [the Centers for Medicare & Medicaid Services] came up with new Conditions of Participation in 2008, which mandated collaboration,” Scholten says.
“CMS wanted to look at the types of patients in the long term care setting who were receiving hospice to make sure there was collaboration and ensure that hospice and nursing homes were not functioning in silos,” she says.
Some of the unease nursing facilities may feel toward hospice comes from the heavy regulations on every aspect of what nursing care does, making attention to detail vital. “There are some barriers hospices may not understand, like the survey process and scrutiny that long term care goes through,” Avery says, noting as an example that some medications put in use by a hospice nurse may cause “alerts to ring” in a state survey.
Nursing facility staff are also accustomed to being in control, making it hard for some to adapt to the presence of hospice personnel, he adds.
For J. Donald Schumacher, NHPCO president and chief executive officer, much has changed since he started in the business in 1978. Then there were very few programs and people involved in hospice (the association added the “palliative” part of its name in 2000), leading to the time the hospice benefit was added to Medicare in 1982, he says.
“There has been a dramatic increase in the last five years, which mirrors population growth,” Schumacher says.
People Seek Comfort
Decades ago, nearly all hospice patients were cancer patients; now that number is less than 40 percent, with a “whole wide range of diseases recognizing the need for hospice care,” he adds. “People do want comfort, a pain-free existence. This trend has been steadily building over the years. You don’t have to die in extreme pain.”
Schumacher is excited by one part of the health care reform law that will see the Medicare program begin a 15-site demonstration project in 2012 to provide both hospice care and life-sustaining treatments to Medicare beneficiaries. The law establishes a three-year-long demonstration program during which Medicare will experiment with concurrent coverage. Medicare currently will cover the cost of hospice care only after a physician diagnoses a patient as having less than six months to live, and after the patient stops receiving any life-sustaining treatments.
Does Hospice Work?
Researchers at the University of California-Los Angeles found that the use of hospice care by terminal prostate cancer patients jumped from 30 percent in 1992 to 60 percent in 2005. These hospice patients were 20 percent less likely to receive costly, high-intensity care and were also less likely to undergo imaging tests. Researchers believe this is evidence that increased use of hospice care, especially for cancer patients, can cut health care costs. The report findings were published in the Archives of Internal Medicine.
On the other side, a study of terminal heart failure patients did not indicate any cost savings from increased hospice services. Duke University School of Medicine researchers analyzed the records of 230,000 Medicare heart failure patients who died between 2000 and 2007. The study, which also appeared in the Archives of Internal Medicine, found that although the rate of hospice care climbed from 19 percent in 2000 to 40 percent in 2007, the rate of costly hospitalizations remained around 80 percent. Health care costs for this group during the last six months of life rose from $28,000 per patient to $36,000 per patient.
Minding The Gaps
Avery notes that Golden Living obviously thinks a lot about the importance of end of life since it hired him as medical director. Before Golden Living, he was the senior medical director for Visiting Nurse Service Hospice Care of New York, the largest hospice in New York City.
Now ensconced at Golden Living, which has a hospice arm called Asera Care Hospice, he preaches the mantra of minding GAPS, which Avery explains as G—Goals of Care, A—Advanced Care Directives, P—Pain and Symptom Management, and S—Spiritual and Social Care. The elements contained in GAPS are many, from making sure advanced care directives travel to the emergency room, to working off a unified pain scale with hospices and other caregivers, including special provisions for patients with dementia who cannot communicate. This can include clenching of teeth or hands to indicate the level of pain.
For spiritual matters, Avery says top Golden Living executives learned a lot on this subject when they took a pilgrimage to the Duke Institute of Care at the End of Life, understanding the importance of getting every aspect of a resident’s end of life tailored to his or her specific needs.
NHPCO, in collaboration with Duke and Project Compassion, has created a nondenominational guide intended to help hospices and coalitions reach out across traditional religious and cultural lines.
Separately, a survey of professional clergy and lay leaders by Duke indicates that many faith community leaders do not have the knowledge, resources, and support they need to care for people during the end of life. Though 90 percent of clergy report visiting with people at end of life, only 60 percent describe themselves as “very comfortable” making these visits; fewer than 40 percent of leaders surveyed feel comfortable training lay people to offer support for others; and fewer than 20 percent of respondents offer any education related to serious illness, caregiving, end of life, or grief.
Advance Directives
Amidst the discussion on end-of-life care is the growing emphasis on advance directives, resulting in part from the 1990 Patient Self-Determination Act. This law requires all health care facilities receiving Medicare or Medicaid funding to inform patients of their rights to refuse medical treatment and to sign advance directives. These directives can be formal, legally endorsed documents like living wills and health care power of attorney.
Advance directives are not the same as DNR (do-not-resuscitate) orders; instead, these orders are signed by a medical doctor and put into a patient’s medical record acting as a complement to the advance directive. The DNR order is part of an overall paradigm, called the Physician Orders for Life-Sustaining Treatment (POLST).
A POLST Paradigm form is a brightly colored medical order form used to write orders indicating life-sustaining treatment wishes for patients with serious illnesses. The form accomplishes two major purposes: It turns treatment wishes of an individual into actionable medical orders, and it is portable.
POLST Goes A Step Further
POLST was developed initially in response to patients receiving medical treatments that were not consistent with their wishes. The goal of a POLST Paradigm Program is to honor patients’ end-of-life treatment preferences either to have or to limit treatment, even when transferred from one care setting to another.
The POLST form complements the advance directive and is not intended to replace it. An advance directive is necessary to appoint a legal health care representative and provide instructions for future life-sustaining treatments. The advance directive is recommended for all adults, regardless of their health status. A POLST form should accompany an advance directive when appropriate.
A health care professional (usually a physician, nurse practitioner, physician assistant, or social worker) completes the form after understanding the patient’s values and goals of care. A POLST Paradigm form is a medical order and is not completed by the patient. The form must be signed by a physician to be in force.
Many states also require the patient’s or chosen decision-maker’s signature.
Family members may be able to speak on behalf of a loved one. A health care professional can complete the POLST Paradigm form based on family members’ understanding of their loved one’s wishes.
Medicare Problems
Miller’s report says there are major shortcomings in the Medicare hospice benefit that appear to influence the timing of referral (resulting in very short and very long stays), and these may limit further increases in access for nursing facility residents.
First, the need for a physician-certified, six-month terminal prognosis creates substantial barriers for persons with non-cancer chronic terminal illnesses for whom a six-month prognosis is difficult to predict. Although this barrier affects persons dying in SNFs and others settings (72 percent of persons with non-dementia chronic terminal illnesses die in non-SNF settings), the barrier is particularly important given the high proportion of SNF residents with chronic terminal illnesses.
Another major barrier arising from the Medicare hospice benefit is the requirement that beneficiaries enrolling in hospice must forgo other Medicare Part A care when such care is related to the terminal illness. For beneficiaries in the community or in SNFs, this means that hospital care and curative treatment must be abandoned, but it also often means abandonment of expensive treatments such as blood transfusions or palliative radiation (when hospices lack financial resources to support such care).
The Medicare Payment Advisory Commission has recommended changing the Medicare payment system so that the per diem rate for hospice routine home care better reflects the intensity of hospice service provision.
Because research has shown hospice visits to be more frequent closer to the beginning and end of hospice episodes, it is reasonable to have higher payment rates around the time of hospice admission and around the time a patient is dying, Miller says.
Spreading The Word
In total, the care for a resident is becoming more and more person-centered. And, as this attention to the individual is applied at end of life, the questions asked of the dying are the most important part of ensuring a “good” death.
Peres uses a slide, from The One Slide Project (
www.engagewithgrace.org), to spread the gospel of care for the dying. The point is to engage death with the same purpose as life was engaged. The slide asks: “Can you and your loved ones answer these questions?
- On a scale of 1 to 5, where do you fall on this continuum? “Let me die in my own bed, without medical intervention” is 1 on the scale, and “Don’t give up on me no matter what, try any proven and any unproven intervention possible” is 5.
- If there were a choice, would you prefer to die at home or in a hospital?
- Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness?
- Is there someone you trust whom you’ve appointed to advocate on your behalf when the time is near?
- Have you completed any of the following: written a living will, appointed a health care power of attorney, or completed an advance directive?
The point is to see the passing into death as part of life and to make the process embraceable and as easy on the dying as possible. It is inevitable.