The way cancer patients die influences how family members feel about the quality of care their loved ones received during their final days, a new study shows.
In a survey of family members of older patients who died from lung or colorectal cancer, three things were considered to be associated with "excellent" end-of-life care: early admission to hospice, avoidance of intensive care unit (ICU) admissions in the month before death, and death that occurred outside the hospital.
The study is published in a special Death and Dying issue of JAMA.
"Researchers have been aware that the measures looked at in this paper are potentially harmful but have never validated them from the patients' or family members' perspective," lead author Alexi A. Wright, MD, from the Dana-Farber Cancer Institute, Harvard University, Boston, Massachusetts, told Medscape Medical News.
"One of the reasons this paper was so important to me is that the findings suggest that enrolling patients in hospice earlier and avoiding ICU admissions and in-hospital deaths are the areas to target to improve patients' end-of-life experiences," Dr Wright said.
Dr Wright and her team surveyed 1146 family members of older patients (median age, 76 years; range, 65 to 87 years) who died from lung or colorectal cancer to learn more about their perceptions of the quality of care that their loved ones received.
The researchers found that, overall, 51% of family members reported excellent end-of-life care for their loved ones.
The families were more likely to assess end-of-life care as excellent if the patient received hospice care lasting more than 3 days, compared with less than 3 days or none (59% vs 43%); if the patient had not been admitted to an ICU within 30 days of death (52% vs 45%); and if the patient had not died in the hospital (57% vs 42%).
In addition, family members of patients who did not receive hospice care or who received it for 3 days or fewer were much less likely to report that their loved ones died in their preferred location than were family members of patients who received hospice care for longer than 3 days (40% vs 73%).
"Our study findings are a powerful argument for the importance of advance care planning. The more information patients have, the more likely they are to receive the kind of medical care they want near death," Dr Wright said.
Physicians, patients, and families need to have more frequent conversations about what patients want at the end of their life, she added.
"There are studies that show that more than 80% of patients with advanced tumors want information about how long they have to live and what their end-of-life care options are. Providing them with that information, or at least checking in to see if they want it, is critically important. Also, a patient's preferences for information and care change over time, so it's not a one-time conversation, it's something that needs to continue throughout the course of care," Dr Wright said.
Remove Barriers to Hospice
In this study, timely access to hospice care was found to be a major factor in bereaved families' rating the care their loved ones received at the end of life as excellent.
A current problem is that most access to hospice comes with conditions, mandated by Medicare, which many patients find unacceptable. They are often reluctant to enroll in hospice because they may have to give up their relationship with their physician and forgo curative care, Dr Wright said.
"Anything we can do to remove barriers that get in the way of patients having the care they want is important, and one of those barriers right now is the false dichotomy between providing palliative care and hospice care," she said.
Hospice care gained an important boost in 1982, when Congress created the Medicare Hospice Benefit, which enabled older US adults to receive hospice care. But many patients were made to feel that going into hospice meant that they were giving up any hope of cure.
"Paradoxically, some of the requirements of the benefit also created barriers to enrollment," Oreofe O. Odejide, MD, a colleague of Dr Wright's at the Dana-Farber Cancer Institute, writes in an accompanying commentary.
To go into hospice, patients had to be within 6 months or less of death, and they had to be willing to forgo curative treatment.
Such enrollment requirements "result in underuse of hospice and instead contribute to excess use of hospital care and intensive care at the end of life," Dr Odejide writes.
The problem is most acute for patients with hematologic malignancies, she adds.
"Patients with hematologic malignancies have the lowest rates of hospice use in oncology, and when they do enroll, they are likely to do so within 3 days of death. These patients also have high rates of intensive care near the end of life, and many die in hospital," Dr Odejide writes.
A barrier to hospice care for patients with hematologic malignancies is that the reimbursement structure of the hospice benefit is insufficient for hospices to provide blood transfusions.
"The requirement for patients to forgo disease-directed therapy creates an artificial dichotomy between hospice care and disease-directed care that is palliative and does not account for many treatments or procedures whose purpose is simply to help patients feel better (eg, blood transfusions, radiation, or drainage of excessive fluid from the abdomen)," she writes.
Educating patients and physicians about the usefulness of hospice is not sufficient to remove these barriers. Instead, policy prescriptions are clearly needed, Dr Odejide writes.
A Move in the Right Direction
Some hospice organizations and insurance companies are starting to find innovative ways to address the barriers, she adds.
In 2005, Aetna launched a pilot comprehensive case management program and expanded hospice benefits for patients with advanced illness. The company extended the definition of terminal illness from 6 months to 12 months and allowed patients to receive some types of antineoplastic treatment while they also received hospice services.
This is a step in the right direction, Dr Wright said.
"Medicare is now allowing some hospices where patients do not have to make this either/or choice. Under the Medicare Choices Model, which was announced in 2014, 30 Medicare-certified hospices were deemed able to provide palliative services as well as hospice for patients with advanced cancers, COPD, heart failure, and HIV. So they have palliative care and intensive in-home care, but they also reimburse for drugs that manage symptoms of the cancers, including things like physical therapy, which patients should be able to receive," she said.
"It's a false choice that does not help anyone when we force people to choose between disease-directed therapy and hospice care," Dr Wright added.
Atul Gawande, MD, MPH, Ariadne Labs, Brigham and Women’s Hospital, and Harvard T. H. Chan School of Public Health, Boston, who is author of the recently published book Being Mortal, concerning end-of-life care in the United States, agrees.
Writing in an accompanying editorial, Dr Gawande notes: "The national policy concerning eligibility for hospice services which require that patients give up on curative therapy in order to receive intensive palliative services has been a major contributor to the underuse of hospice, as well as the under-recognition of the value of palliative care and the poor quality of life experienced by patients with advanced disease and limited life expectancy. This needs to change."
Medicare is currently looking into lifting those requirements in 141 hospices across the United States.
This is a "welcome initiative," Dr Gawande writes, but he cautions, "the evaluation runs the danger of continuing to treat support of quality of life differently from support of extension of life. Adoption as national policy should not depend merely on whether the change reduces overall health care costs. It may well do so, based on the experience of private insurers who have tested the idea. Nonetheless, just as with any other medical intervention, the key measure of effectiveness is how much it improves patients' health and well-being.”
Dr Wright and Dr Odejide report no relevant financial relationships. Dr Gawande has received royalties and payments from publishers and media outlets worldwide for his writing and media presentions on medicine, including payments for a book and documentary film on care at the end of life.
Medscape Medical News © 2016 WebMD, LLC
Send comments and news tips to email@example.com.
Cite this: Early Admission to Hospice Key to Good End-of-Life Care - Medscape - Jan 21, 2016.