Boomers Want Control of Their End-of-Life Care
A state-level movement has evolved to give terminally ill patients more say in what medicine and medical procedures they want during their final days. View our special series on aging in America at governing.com/generations.
Assisted suicide. Euthanasia. Death panels. Rationed health care.
There’s nothing like a well-chosen phrase to inflame talk about end-of-life care -- how the health-care system cares for those who are in the last stages of a terminal illness and how much control patients and their families have over that process.
It can be an emotional and divisive issue, and for lawmakers, a dangerous business. That’s certainly something President Obama quickly learned when a provision in the Affordable Care Act (ACA) that encouraged doctors to engage patients in discussions about end-of-life care quickly deteriorated into a nationwide war of words over whether such one-on-one discussions between patient and physician would result in “death panels” determining who should receive care.
Explore the topic of aging in America through in-depth stories, data and interactive content at governing.com/generations.
But with America rapidly aging, the subject of end-of-life care isn’t going to go away. It has the attention of any legislator or government official trying to make sense of health-care budgets in general and Medicare expenditures in particular. That’s because in their last year of life, older adults consume more than a quarter of Medicare’s expenditures, costing more than six times as much as other beneficiaries. It also has the attention of hospital officials. Under the ACA, hospitals will be penalized by Medicare for high readmission rates. That means there will be more focus on avoiding the ping-ponging of terminally ill patients that often takes place between nursing homes and hospitals as people near the end of their lives.
Meanwhile, an increasing percentage of Americans say they want more control over how they will be treated should they become terminally ill. Faced with the mechanistic environment of hospital intensive care units, many older patients say they prefer to die at home, surrounded not by machines but by their family. Others want every option explored, every high-tech trick tried to prolong their lives, even if they are unconscious.
Today, the discussion over end-of-life care is alive and well -- but not on a national level. “It’s pretty quiet right now, and has been since 2009 and the whole death panel debate,” says John Carney, president and CEO of the Center for Practical Bioethics, formed in 1984 to parse out complicated ethical issues around medicine and medical research, including issues like end-of-life care. Rather, the debate and press toward a political solution are currently taking place at the state level. There, policymakers and advocacy groups are managing to defuse the raw emotional responses that national, partisan-fueled battles elicited when the ACA was being debated.
The reason for that is straightforward. Rather than pursuing the “death with dignity” approach to end-of-life decisions -- which immediately inflames the right-to-life lobby -- a low-key movement has evolved in the states. This movement is focused on giving patients facing tough decisions about end-of-life care more say in what medicine and medical procedures they want or don’t want.
If advocates for more rational and patient-centered end-of-life care can avoid the specter of death panels and health-care rationing, there’s the real possibility of progress. Dr. Susan Tolle, who practices general medicine in Oregon and serves as director of the Center for Ethics in Health Care at the Oregon Health & Sciences University (OHSU), says, “When people are using language like ‘death panels,’ there’s more emotion and fear than if you say you want to honor the wishes of this individual.”
One tack that end-of-life care activists are taking is to push state legislation requiring health-care professionals to counsel terminally ill patients and their families on medical choices and palliative care, which is an area of health care that focuses on relieving and preventing the suffering of patients. Such initiatives have not triggered a negative response with right-to-life interests. But that doesn’t mean it has been easy to pass such laws.
According to the national chapter of Compassion & Choices, which is dedicated to advocating for more open discussion around alternatives to intensive and intrusive end-of-life interventions, only California and New York have counseling laws on the books. In New York, it was the Medical Society of the State of New York that came out strongly against the Palliative Care Information Act. Doctors there argued that it inserts the state into what should be private physician-patient relationships. That argument didn’t get far in Albany; the law passed in 2010.
Last year, New York took that approach one step further. The Legislature passed the Palliative Care Access Act, which requires institutions like hospitals, nursing homes and other long-term care facilities to offer end-of-life and palliative care counseling. This step is more significant than the Palliative Care Information Act. According to Kathy A. McMahon, president and CEO of the Hospice and Palliative Care Association of New York State, it has led to a statewide coalition of all the health-care organizations that represent institutions like hospitals and nursing homes and gotten them to pull in the same direction on end-of-life care counseling. “The way to get real change,” McMahon says, “is to get the groups representing the facilities that are required to do this to buy in.”
But working through health-care professionals and health-care facilities to promote end-of-life care counseling is not getting a huge amount of traction in other states. More promising is a rapidly growing end-of-life care phenomenon known as “physician orders for life-sustaining treatment,” or POLST.
The basic idea behind POLST is to give anyone who is judged to have less than a year to live the chance to set out very detailed directions about what sort of care they want or don’t want. “It’s basically a DNR on steroids,” says Carney of the Center for Practical Bioethics. But unlike a “do not resuscitate” order, or an advance directive, POLST forms are formal physician’s orders worked out in advance with a patient or a patient’s advocate. “We have found POLST to be a very successful way to convey immediately actionable medical care based on patients’ wishes,” says Dr. Alvin Moss, director of the Bioethics Program at the West Virginia University School of Medicine.
The other advantage of POLST, at least when done thoroughly, is that it is instantly accessible to everyone from EMTs in an ambulance to doctors in an emergency room. That’s the case in Oregon, where the state maintains a rapidly expanding registry of more than 100,000 POLSTs available online 24 hours a day, seven days a week. There are currently five states with POLST registries, although as electronic medical records systems evolve and grow, POLSTs are likely to become part of any patient’s instantly accessible online record.
Given the registry and general knowledge of POLSTs in Oregon (the state implemented its POLST program way back in 1995), there’s been a significant shift in the behavior of both patients and health-care professionals. “There is a huge amount of public empowerment in this,” says Tolle of OHSU, which hosts the Oregon POLST registry. “We’ve seen a major transformation from ‘We didn’t ask, we just intubated,’ to [medical personnel] asking if someone has a POLST form.”
As for the politics of POLST, the death panel insinuation has not materialized. That may be because health professionals involved in the movement learned their lesson during the ACA fight. Now, when a state legislature is considering a POLST bill, there is a concerted effort to get all interests to the table at the very start, including right-to-life and disability rights groups.
In West Virginia, the key to successfully establishing its POLST program was to send a clear message that POLST wasn’t about helping or even coercing patients to forgo care. It’s about patient choice, says Moss, who also serves on a national POLST task force. The right-to-life lobby agreed to stay neutral on the bill, he says, because they understood that POLSTs were optional. “If a person does want to fill one out, they can say they want CPR, they want a feeding tube. They can have all that.”
The notion of patient control and choice and its two-way nature seems to be fundamental to why POLST has not been as controversial as other laws related to end-of-life care.
Working in its favor, says West Virginia state Sen. Ron Stollings, is the simple reality that it’s directly in line with patients’ wishes. “It’s what my patients want,” says Stollings, a general practice physician who sees a large percentage of elderly clients. “They want high-touch, low-tech. They want meals on wheels and in-home services. They want to get out to the grocery store if they can. They don’t want CAT scans and MRIs.”
More than 14 states now have some form of a POLST system in place, with another 25 states considering programs. Typically, POLST laws and regulations also include language granting caregivers immunity if they follow a POLST form. In registering, POLST participants almost uniformly agree that the form be accessible to all health-care providers, which gets around the privacy concerns of Health Insurance Portability and Accountability Act regulations.
But POLST’s low profile cuts both ways. While it is off the radar of the political social wars, the lack of awareness of or information about POLST is considerable, which means in some states it is nowhere near to living up to its potential. “The process is a slow one,” says David Leven with Compassion & Choices of New York (the state passed a POLST law in 2009). “That’s unfortunate because studies show that when there is a POLST document it’s much more likely that a patient’s wishes will be honored and they will have less aggressive interventions, which makes for a higher quality of life. Right now there’s a major deficit in knowledge.”
The steep learning curve aside, the ultimate promise of POLST is significant. So far, the programs haven’t elicited the strong opposition that arrives with assisted suicide bills. That difference is on full display right now in Massachusetts. There, a bitter, high-profile battle is raging over a ballot initiative to allow terminally ill patients to give themselves a lethal dose of drugs. (Three other states have such laws in place: Montana, Oregon and Washington.)
Meanwhile, Massachusetts is also pursuing a POLST initiative. As long as it hews to hospice and palliative care discussions and doesn’t wander into the territory of assisted suicide, it isn’t a problem with right-to-life interests in the state, says Anne Fox, president of Massachusetts Citizens for Life.
The end-of-life care movement is clearly gathering steam. Public officials and the medical community alike are discussing the topic in growing numbers. With good reason: An aging baby boom cohort and their families are much more tuned in to the subject than previous generations.
Ultimately, the drive toward a more rational, reasoned and patient-centered approach to dying is pretty straightforward. “We are,” says West Virginia’s Moss, “spending lots of money on people who die within a year, in settings they don’t like, getting treatments they don’t want.”
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