Assisted-suicide debate focuses attention on palliative, hospice care
About once a week, healthcare providers call the 24-hour palliative-care hotline at the University of Vermont Medical Center with the same basic question: How should they respond to patients who want to take advantage of the state’s new law allowing physicians to prescribe lethal drugs to terminally ill patients who want to die?
Dr. Diana Barnard, the hospital’s interim medical director of palliativecare services, sees it as an opportunity to help doctors explore their dying patients’ concerns. She says the law has raised awareness about improving end-of-life care. The 2013 law “brought with it a whole parallel movement to try to more broadly look at the needs of people facing serious illnesses at the end of their lives,” said Barnard, a pro- ponent of physician aid in dying.
Many healthcare professionals and patient advocates, regardless of their stance on the emotionally charged issue, hope the recently reignited national debate over physician-assisted suicide will boost awareness and use of palliative care and hospice care. Palliative care is patient- and family-centered care in which an interdisciplinary team focuses on easing patient suffering; hospice is palliative care delivered near the end of life.
Some think public discussion about legalization of physician-assisted suicide has led to the expansion of palliative and hospice care. Others don’t see any connection.
Between 1994 and 2013, hospice use surged, with 1.5 million Americans receiving hospice care in 2013, compared with only 246,000 in 1994, according to the National Hospice and Palliative Care Organization. But barriers to more widespread use of hospice and palliative care remain, including what experts say is insufficient Medicare reimbursement for palliative care and rules that hinder patient referrals to hospice.
Both supporters and opponents of aid in dying say palliative care can improve quality of life for suffering patients and may reduce their desire to ingest lethal medication. But some say there are patients who will still seek the death-with-dignity option, regardless of the quality of their care.
Ann Jackson, former head of the Oregon Hospice Association, said Oregon voters’ approval of the Death With Dignity Act in the 1990s was a “wakeup call” for physicians regarding palliative care. In 2014, 93% of terminally
ill patients who ended their lives under the law were enrolled in hospice before their deaths, according to the Oregon Health Authority.
The political battle over aid in dying has raged for decades, hitting a crescendo when Oregon became the first state to legalize the practice. Two doctors must independently determine that patients who request aid in dying have six months or less to live, are mentally competent and are voluntarily choosing the option. The U.S. Supreme Court ruled in 1997 that there is no constitutional right to physicianassisted suicide, leaving the matter up to the states.
Last year, the issue shot to national prominence, fueled by the case of Brittany Maynard, a young California woman with brain cancer who moved to Oregon and took a lethal prescription in November to end her life. In the months before she died, working with advocacy group Compassion & Choices, she blogged and made videos seen by millions about her reasons for seeking death with dignity.
Since then, lawmakers in more than 20 states have introduced legalization bills, and lawsuits joined by physicians have been filed in California and New York challenging state laws barring assisted suicide. In addition, Canada’s highest court recently legalized the practice in that country. Barbara Coombs Lee, president of Compassion & Choices, said she’s never seen so much attention on the issue.
A Gallup poll last year found that 69% of Americans favored allowing doctors to “end a patient’s life by some painless means,” though that figure dropped to 58% when people were asked if they supported allowing doctors to help incurable patients “commit suicide.” An online survey published by Medscape in December found that 54% of responding doctors said physicianassisted suicide should be allowed.
Aid in dying is now legal in five states, including Oregon and Washington, where voters approved ballot initiatives; Vermont, where the Legislature passed a law; and Montana and New Mexico, where it was legalized as a result of court cases brought by doctors and patients.
“In any state in which this would be offered to patients, there would really be a moral imperative to make sure they’re not choosing it because they didn’t receive the best palliative care available,” said Dr. Joe Rotella, chief medical officer with the American Academy of Hospice and Palliative Medicine, which has a neutral position on physician-assisted suicide.
Studies indicate that Oregon’s law has led to improvements in palliative and hospice care. Thirty percent of Oregon doctors who responded to a 1999 survey said they had increased the number of patients they referred to hospice after voters approved the law. Three-quarters of responding doctors who had cared for terminally ill patients said they had worked to improve their knowledge of pain medication for those patients, according to a 2001 article in JAMA.
But some say the debate over physician-assisted suicide has distracted attention from the importance of improving and expanding hospice and palliative care, even leading people to equate hospice with aid in dying. “There’s a really big misconception about what hospice is, and this whole suicide debate has worsened that misconception,” said Dr. Warren Fong, president of the Medical Oncology Association of Southern California, which opposes a pending bill in the California Legislature to legalize physician-assisted death. “When people go on hospice, they think, ‘I’m giving up, I’m failing my family. I’m committing suicide.’ It’s not that, it’s just acceptance that we’re humans.”
Others doubt that the assisted-suicide debate has been a significant factor in the growth of palliative care and hospice care. Separate from that issue, end-of-life care has become a hot topic in healthcare, with a greater focus on open communications, advance directives and avoiding overtreatment of dying patients.
The number of hospice providers grew from 2,312 to 5,800 between 1994 and 2013, according to the National Hospice and Palliative Care Organization. Also, the percentage of U.S. hospitals with more than 50 beds that have palliative-care programs grew from 24.5% to 72.3% between 2000 and 2013, according to the Center to Advance Palliative Care.
“Hospice use has increased as the years have passed,” said Deborah Whiting Jaques, CEO of the Oregon Hospice Association and executive director of the Washington State Hospice and Palliative Care Organization. “But I don’t link aid in dying with growth in use of hospice services.”
Everyone agrees there’s still more room for expansion in the use of hospice and palliative care. “There are others who could benefit from these services
but still do not receive them for a myriad of reasons,” said John Mastrojohn, executive vice president of the National Hospice and Palliative Care Organization.
Some would like to see patients use hospice and palliative care earlier in their illnesses, though there has been concern about growing Medicare hospice costs related to inappropriate usage. The median length of time patients received hospice care in 2013 was 18.5 days, according to the National Hospice and Palliative Care Organization.
Some barriers are institutional. Medicare patients are eligible for hospice care only when two doctors certify that they have six months or less to live— a prognosis that can sometimes be difficult to make. Physicians still are not paid by Medicare for counseling patients on advance directives, though there are proposals to change that. Also, Medicare patients have to abandon curative treatment before they become eligible for the hospice benefit—forcing them into a choice they may not be ready to make.
The latter is an issue recognized by the CMS, which is running a Medicare demonstration allowing selected hospice providers to offer care to beneficiaries still receiving curative therapies. The CMS has said it will choose at least 30 rural and urban Medicare certified and enrolled hospices to see whether the model leads to improved care and greater patient satisfaction.
Another obstacle to better palliativecare access is that Medicare does not offer comprehensive payment for palliative care. A doctor involved in palliative care can bill under Medicare Part B. But most of the rest of the palliativecare team—which might include a social worker, chaplain, pharmacist and others—generally cannot bill, Mastrojohn said.
Despite those Medicare payment policies, many hospitals have palliative-care teams because they recognize that good palliative care can reduce costs and improve quality of care by leading patients to avoid futile care, Rotella said.
Hospitals with more than 300 beds are more likely to have a palliative-care team than smaller hospitals with fewer than 50 beds. About 88% of larger hospitals had a palliative-care team in 2010, compared with about 23% of smaller hospitals, according to the Center to Advance Palliative Care.
Some say that removing these and other obstacles to hospice and palliative care would reduce the number of terminally ill patients who request physician assistance in dying. “The medical system has created many of the problems that have led people to now believe wrongly they need assisted-suicide options at the end,” said Dr. Aaron Kheriaty, director of the medical ethics program at the University of California at Irvine, who opposes physician-assisted suicide. “We need to do a better job of educating not just the general population, but also our fellow physicians, many of whom are very ignorant about the whole specialty of palliative care.”
But Dr. Howard Grossman, a plaintiff in the lawsuit to legalize aid in dying in New York, said he doesn’t believe good end-of-life care and aid in dying should be mutually exclusive. “You can do all the pain control in the world short of putting someone into a coma, and you could have the most wonderful hospice care that provides everything for somebody, and someone still might not want to go through those last bits of the dying process,” he said.