In 1997 the Committee on Care at the End of Life at the Institute of Medicine (IOM) issued a report, Approaching Death: Improving Care at the End of Life. Everyone is entitled to a “decent or good death,” the committee wrote, one without avoidable suffering, a death that's in line with patients’ and families’ values and “reasonably consistent with clinical, cultural, and ethical standards.” Now, 16 years later, a new IOM committee with a new name has been convened. The Committee on Transforming End-of-Life Care held its first meeting in February; it will take input from professionals and the public and issue a new report within 18 months.
Figure. Jolean Sloan...Image Tools
The goals named in the 1997 report might sound like the standard of care in this country, especially since the establishment of the modern hospice movement in the 1970s. So why is a new report needed? Physician Christine Cassel said at the meeting that health care has become increasingly aggressive in promoting lifesaving treatments, with hospitals erecting “huge glossy buildings” funded by technology companies, but “nobody puts up a billboard outside their academic medical center saying, ‘We're the best place to die.’ It's very hard to celebrate that.”
A part of the committee's task, Cassel said, will be to discern how to transform the current “value equation” so that institutions place as much emphasis on the patient's and family's experience of death and dying as they do on saving lives. But that will require a change in “how we think about health care and how we pay for health care,” she said.
THE VALUE OF GOOD PALLIATIVE AND END-OF-LIFE CARE
A retrospective study by Kelley and colleagues in the March issue of Health Affairs found that hospice resulted in a significant reduction in Medicare costs, regardless of how long hospice care lasted (one to seven days, eight to 14 days, 15 to 30 days, or 53 to 105 days). There were also fewer hospitalizations, ICU stays, and hospital deaths, and lower rates of readmission after 30 days, in patients receiving hospice care.
But, the researchers speculate, “aggressive efforts to curtail Medicare hospice spending” prevent many eligible patients from being enrolled in hospice. In a 2011 report, for instance, the Office of the Inspector General reported that from 2005 to 2009, the number of Medicare beneficiaries receiving hospice services increased 40% but expenses increased 69%—from $2.55 billion to $4.31 billion—with for-profit hospices receiving a larger percentage per beneficiary. That report placed a spotlight on Medicare expenses for hospice care, in an effort to prevent fraudulent billing. As Kaiser Health News reported in January, such scrutiny has caused a nonprofit hospice in San Diego to cut 260 workers and no longer serve patients likely to live longer than six months but who need a higher level of care.
Kelley and colleagues write that “instead of working to reduce Medicare hospice spending and creating a regulatory environment that discourages continued growth in hospice enrollment, the Centers for Medicare and Medicaid Services should focus on ensuring that patients’ preferences are elicited earlier in the course of their diseases and that those who want hospice care receive timely referral.”
In late 2010 nurse Amy Berman gained a unique view on the barriers to palliative and end-of-life care: she received a diagnosis of inflammatory breast cancer that had spread to her spine. She's the senior program officer at the John A. Hartford Foundation, a private philanthropy working to improve geriatrics care, and as a nurse she understood immediately that the prognosis was poor; only 40% survive five years. When a consulting oncologist urged chemotherapy, surgery, and radiation, Berman decided against it.
That option, she said in a recent interview, entailed “basically stripping my quality of life and doing the most aggressive version of treatment. But there was nothing to suggest I would have a better life.”
Now, two and a half years later, Berman is well—not cancer free but “absolutely living,” as she put it, with minimal pain. She works, she bicycles, and she credits the high quality of her life to the palliative care she has received.
Berman said that there's confusion between palliative and hospice care. Palliative isn't provided solely to those who are actively dying. Rather, it's for anyone, like Berman, faced with serious illness or the adverse effects of treatment. But just because palliative or hospice care is available doesn't mean patients will receive it—if, say, a physician “doesn't integrate it into care, or you're in a clinical trial and they want to keep you from it,” said Berman. “There are lots of things that mean it's available but you won't get it.”
That's borne out by a study by Teno and colleagues in the February 6 issue of JAMA. They compared Medicare beneficiaries who died in 2000, 2005, and 2009 and found that there was an increase in hospice use from 2000 (22%) to 2009 (42%) and a lower rate of deaths in acute care hospitals by 2009. But 28% of those who died in 2009 used hospice for only three days or less, and there was an increase in both ICU stays and in transitions among settings in the last month of life. In 2009, 29% died in an ICU.
EXPANDING ACCESS TO THE UNDERSERVED
The lead author of that study, Jean M. Teno, wrote in a blog post for CNN in March, “Does this pattern of care reflect the informed wishes of dying patients and their families? Our research does not provide the answer to this important question. But it is something we really need to know.”
Since she became a nurse in 1970, Kandyce Powell, executive director of the Maine Hospice Council and Center for End-of-Life Care in Augusta, has dedicated herself to ensuring that care for dying patients reflects their wishes and the wishes of their families. The council started in 1984 with volunteers and received its first state funds in 1992, when Powell assumed her position. There were Medicare-funded hospice programs throughout the state at the time, Powell said in a recent interview, but “conspicuously absent” were any partnerships or coalitions addressing end-of-life policy. Powell began the painstaking work of talking with people representing a variety of interests in beginning to craft a statewide hospice licensure law.
“Some of these issues are so huge that it can take a while to get the infrastructure in place to be able to sustain the changes needed,” Powell said of her policy work. “And you have to be a respectful, persistent thorn in everybody's side, someone people want to trust.”
Her persistence paid off in the passage of that law in 1993, and since then Powell has seen an evolution in the provision of hospice services in Maine. One area attracting her focus, she said, is widening the access to end-of-life care to underserved populations. “Hospice is known as a white, middle-class service,” Powell said, and indeed, according to the National Hospice and Palliative Care Organization, 82% of patients receiving hospice services in 2011 were white. “That has never sat well with me. Part of what we are doing is to constantly identify those who are not being served and identify why.”
For example, the council has targeted state prison inmates for more than a decade. The Maine State Prison Partnership has undertaken the education of inmates as well as prison staff; currently, 14 inmates are trained as hospice volunteers. “These inmates have talent and potential. Believe it or not, some of them have incredible emotional intelligence,” she said.
ACKNOWLEDGING BEREAVEMENT, ENCOURAGING CONVERSATION
“Emotional intelligence” may be needed within health care systems, as well. Rana Limbo, director of bereavement and advance care planning services at Gundersen Lutheran Medical Foundation in La Crosse, Wisconsin (see www.bereavementservices.org), and a nurse with longtime experience with perinatal death, said recently that what health care providers often overlook is the grief that patients and family members experience throughout the course of an illness.
“Bereavement starts with the diagnosis,” Limbo said. “Whether it's a diagnosis of congestive heart failure, an ultrasound of a baby showing anencephaly, a child who has leukemia, it starts there. With the diagnosis is a forever-changed life, whether the person ends up living or dying. That shift is quite critical.”
And because no one can anticipate how she or he will respond to a life-threatening diagnosis and the shifts that can occur as illness progresses, advance care planning isn't just a one-time event, Limbo said. Rather, it's an ongoing conversation. Respecting Choices, an initiative at Gundersen, guides patients and trains clinicians and health systems worldwide in advance care planning, with an emphasis on clear communication (go to http://respectingchoices.org). “The steps are prescribed,” Limbo said, “but the way the conversation occurs is not. It's not prescriptive; it's quite open.” (For more, see Resources for Palliative and End-of-Life Care.)
To illustrate how central nurses can be in easing bereavement, Limbo recalled a patient of hers from 30 years ago. The woman's son had been born prematurely and died a few minutes after birth, and afterward Limbo helped to move the patient to the postpartum floor.
“I introduced myself and expressed my condolences,” Limbo said. “A few days later I walked into her room and said, ‘Do you remember me?’ The woman said, ‘Do I remember? I will never forget that woman who looked into my eyes.’” Limbo said that story shows “the kind of things that make nursing what it is. It's all about making use of those moments.”—Joy Jacobson
Resources for Palliative and End-of-Life Care
The Conversation Project, cofounded by journalist Ellen Goodman, encourages everyone to discuss their end-of-life wishes with those closest to them. Resources include an interactive, step-by-step starter kit. http://theconversationproject.org
Curtis R, et al., eds. State of the science: palliative care and end of life. Nursing Outlook 2012;60(6): A1-A10, e1-e2, 337-422. The November–December 2012 special issue includes articles on nursing research, symptom management, pediatrics, advance care planning, and the needs of family caregivers, among other topics. http://bit.ly/Yy8mij
The National Prison Hospice Association offers support to corrections and health care professionals in providing end-of-life care to prison inmates. http://npha.org
The Hospice and Palliative Nurses Association provides education and networking for nearly 10,000 nurses. www.hpna.org
The National Hospice and Palliative Care Organization (NHPCO) is “the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States.” Programs focus on legislation and advocacy. www.nhpco.org
Caring Connections, a program of the NHPCO funded by the Robert Wood Johnson Foundation, aids the general public in making end-of-life decisions “before a crisis” and works at local and national levels to improve end-of-life care through its campaign, It's About How You LIVE. www.caringinfo.org
The Center to Advance Palliative Care, a national organization out of Mount Sinai School of Medicine in New York City, provides “tools, training, and technical assistance” to professionals wishing to start or maintain palliative care programs. www.capc.org
Let's Have Dinner and Talk About Death, a project of the Master of Communication in Digital Media program at the University of Washington in Seattle offers interactive opportunities to focus on “the most important conversation Americans are not having.” www.deathoverdinner.org
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