Stephen Kiernan knows about dying. He has witnessed the worst and best ways of leaving this life.
“My father’s end-of-life care involved every imaginable medical extravagance, which in retrospect I believe was torture. It also cost a fortune,” he said. “Five years later, my mother died pain-free at home in her bed, with her prayer book in her hand and family at the bedside. And it cost one-tenth as much.”
Years later Kiernan, who lives in Charlotte, would write “Last Rights: Rescuing the End of Life from the Medical System,” and hear more than 10,000 stories like his own from readers of his book.
“When I started researching end-of-life care, I learned that the dilemmas that my brothers and sisters and I faced with our parents were not unique – they were commonplace. About 6,000 Vermonters die every year. About 1,400 of them have my mother’s experience, thanks to hospice and palliative care, and having an advance directive in place. The rest of those Vermonters suffer avoidable physical pain, preventable emotional anguish and unnecessary intervention and expense,” he said.
“This is not like mapping the human genome or inventing the artificial heart,” Kiernan added. “We know how to take good care of people in the last chapter of their lives. We need a greater commitment to doing that.”
More than 80 percent of Vermonters say they want to die at home, yet most die in a hospital or nursing home – except for one group. Three out of four people enrolled in hospice care die in their own homes.1 But Vermont ranks near the bottom nationwide in hospice use: Medicare spending on hospice care per Vermonter is well below the national average.
Read about U.S. Hospice Utilization by State.
Supporters of a bill that passed unanimously in the House hope it will increase the number of Vermonters who take advantage of hospice. The intent of H.201, “An Act Relating to Hospice and Palliative Care,” was to remove obstacles that discourage patients from choosing the service by:
- directing the state – and urging private insurers – to take the steps needed to provide an “enhanced hospice access” benefit
- removing the barriers of access to Choices for Care for hospice patients
- taking measures to ensure that patients do not receive unwanted treatment, and do receive desired treatment, in a medical emergency and
- providing that practitioners of medicine and surgery complete 10 hours of continuing medical education to renew their licenses.
What’s the difference between hospice and palliative care? Mel Huff explains.
A study conducted by Aetna, the insurance company, inspired the section of H.201 that provides for expanded hospice benefits. In 2005, Aetna launched a pilot project that offered a group of participants “enhanced hospice access”: Patients with a diagnosis of a terminal illness and a life expectancy of 12 months were permitted to elect hospice care. They were also allowed to continue curative treatment while they received hospice services. Currently, patients must acknowledge that they have only six months or less left to live and agree to forego curative therapies in order to receive Medicare hospice benefits. Most private insurers follow Medicare’s lead.
Aetna reported that the enhanced hospice benefit and nurse case management resulted in an increased use of hospice, a decrease in acute care and lower use of services provided in hospitals. Medicare data show that a quarter of all health care costs are incurred by intense medical treatment in the last six months of life; hospice care is much less expensive. The net result of the Aetna pilot was a 22 percent decrease in costs. In September 2009, Aetna began offering enhanced hospice benefits to most employer groups.
Read the Palliative Care and Pain Management Task Force Annual Report, 2011.
Rep. Bill Frank, who introduced H.201, pointed to three elements that contributed to the success of the pilot project. First, Aetna’s nurse case manager followed the patients to make sure they were getting appropriate care. Second, receiving a prognosis of a year of additional life seemed less daunting to patients than a six months’ prognosis. And third, after entering the hospice program, patients who felt they needed curative therapies they had previously received could still receive them.
Chemotherapy, for example, is sometimes used for palliative purposes, although Medicare considers it curative. Under the present hospice guidelines, cancer patients who enter hospice can’t receive chemotherapy.
“One reason people don’t take advantage of hospice is that they don’t want to admit they’re near the end of life, and they don’t want to give up curative care – they think they will have pain,” Frank said. “But Aetna found that if you allow people to be able to go back on curative care, even if for a short time, it not only helps the patient, because they know they’re not giving it up completely, but it also helps them have a better quality of life. When we reviewed this report, this was very promising for both patients and for saving money. Something that’s better and costs less money – talk about a ‘win-win’ situation!”
H.201 requires the state to apply for Medicare and Medicaid waivers to allow Vermont to provide enhanced hospice access, and it recommends that insurance companies provide similar benefits. “That’s a substantial extension of hospice,” Frank observed.
Cindy Bruzzese, the executive director of the Vermont Ethics Network, echoed his remarks. “We have some evidence now that shows that we can improve quality of life for patients, improve patient and family satisfaction, reduce the repeat admissions and acute admissions to the hospital and also reduce costs.
“It’s not frequent that all the stars align where we’re doing a better job of providing care and spending less money,” she said. “This seems like a model that’s worth replicating.”
Another provision of H.201 affects fewer people but is also an important step in expanding access to hospice. Currently, people who are in the Choices for Care program can enter hospice when they become eligible if the services aren’t duplicated, but it doesn’t work the other way around. People who enter hospice become ineligible for Choices for Care.
Choices for Care, which is funded through a Medicaid waiver, helps people 65 years old or older stay in their homes by providing them with personal care, meal preparation, laundry and housekeeping, and other services. Some people, however, have delayed enrolling in hospice because they first want to get into for Choices for Care. Approval for the program can take two to three months. Bruzzese noted that some people have died waiting.
“It forced some people not to access hospice. It forced them to make a choice they shouldn’t have to make,” observed Long Term Care Ombudsman Jacquie Majoras. “The bill allows people on hospice to apply for Choices for Care, so it doesn’t matter which door you come in first.”
The bill also reduces the potential for patients’ end-of-life wishes to be inadvertently disregarded.
H.201includes a provision for standardizing the “Do Not Resuscitate/Clinician Orders for Life Sustaining Treatment” (DNR/COLST) form. Using a standard form statewide will make it easier for EMTs to find information quickly.
In addition, the provision requires health care providers and facilities to ensure that a patient’s advance directive – along with any changes to it – and his DNR/COLST order be “promptly available,” and that file jackets and folders note that the patient has these directives.
Dr. Robert Macauley, a palliative care physician and the medical director of clinical ethics at Fletcher Allen Health Care, helped formulate the uniform DNR and “limitation of treatment” order form.
He noted that a Do Not Resuscitate order addresses only cardiopulmonary resuscitation: A person can have a DNR order but still receive other types of emergency care, such as oxygen and intravenous fluids. The Clinician Orders for Life Sustaining Treatment, or COLST form, allows the patient to document his wishes regarding types of treatment beyond CPR, such as intubation and mechanical ventilation, a feeding tube or antibiotics.
“There have been studies that have shown that for patients that have the entire form filled out, they’re subjected to much less treatment that they don’t want than if they don’t have the form filled out,” Macauley observed.
“One of the classic things I teach a lot about is that DNR doesn’t mean ‘Do Nothing,” Macauley noted. “It just means, ‘Don’t do CPR if someone’s heart stops.’ That’s all it says. There are a lot of people who want everything else except for that, and that’s fine.
“One thing a lot of people don’t realize is that the odds of good outcomes from CPR, even in a hospital, are pretty poor. In the largest study to date, if you’re sick enough to be in the hospital and your heart stops, your odds of surviving with CPR, leaving the hospital and going back to the same level of functioning you had before is about 10 percent,” he explained.
“I’ve had lots of patients who say, ‘If I get an infection, give me antibiotics. If I can’t keep food down, give me IV fluids. Maybe if my kidneys stop working, give me dialysis. All those things have a pretty good shot for working for a time-limited event, and they can get me back to where I was before, but if my heart stops, I don’t want to go down that road because it can inflict injury and the odds of it working out in my favor are pretty slim.”
Macauley observed that many people who have an advance directive think the document will ensure that their wishes will be followed. What they don’t realize, he said, is that in the hierarchical medical system, “Our presumption is we do everything for everybody unless there’s a (physician’s) order not to.
“So a person might have an advance directive that says, ‘Under no circumstances if my heart were to stop do I want to get CPR.’ If they’re at home, their heart stops, someone calls 911, the paramedics walk through the door and a family member says, ‘Here’s the advance directive where the patient said he would never want CPR,’ and the paramedics will start doing CPR, because there’s no doctor’s order,” Macauley said. “The only way to prevent CPR is having a doctor’s order saying, ‘Don’t do CPR!’ A lot of physicians don’t even understand that.”
Despite the benefits of hospice to patients and families and the fact that Medicare pays the entire cost (there are no co-payments), the service is poorly utilized in Vermont. On average, Vermonters who enroll in hospice receive services for fewer than eight days, according to the Dartmouth Atlas. This is despite the fact that anyone in hospice care who outlives her six month prognosis will continue to receive services until she dies.
Frank contends that one reason for delays in accessing hospice is that many doctors don’t tell patients soon enough that they are nearing the end of life. They wait until the patient’s organs start shutting down, a week or two before death occurs. “The person could have used hospice services months before that,” Frank says.
Many doctors, the legislators found, had never received any training in palliative care or hospice – the courses weren’t available when they were in medical school. A lack of familiarity with the services is one reason for the lack of referrals to hospice, the law-makers reasoned.
When the Human Services committee looked into requiring clinicians to earn some continuing medical education credits in end-of-life care as a condition of license renewal, members discovered that Vermont is one of a handful of states the doesn’t require doctors to take any continuing medical education to renew their licenses.
“In order to get your license renewed in Vermont, a physician only has to fill out a form and write a check,” Frank said, although he noted that professional medical organizations and hospitals require continuing medical education.
A provision to require four hours of continuing medical education in palliative care, hospice, end-of-life care and management of chronic pain was taken out of H.201 after committee members were deluged with protests from doctors, Frank said.
Madeleine Mongan, Vice-President of the Vermont Medical Society, explained that physicians were concerned not about the Legislature requiring continuing education, but about it mandating specific content, “because then you can get into something like ‘the flavor of the month,’ and next year it’s bioterrorism or domestic violence – these are all important issues,” she said.
A compromise amendment provides that doctors take 10 hours of continuing medical education during the biennial license renewal cycle, and show evidence of recognizing the need for “timely appropriate consultations and referrals to assure fully informed patient choice of treatment options, including treatments such as those offered by hospice, palliative care and pain management services.”
Kiernan, who testified “aggressively” at the hearings, argues that doctors should be required to learn the basics of end-of-life care. “Even the best-intentioned, smartest doctor isn’t going to be very good at a care he doesn’t know how to provide,” he asserts. Kiernan cites several studies showing that doctors overestimate – often significantly – the length of time that patients have left to live. Such errors determine the kind of care patients receive at the end of life.
Macauley finds himself in the minority among his colleagues in regard to the requirement of continuing medical education in hospice and palliative care.
“I thought it was a good idea,” he said. “There’s an old saying about people that says they don’t know what they don’t know. They’ve done studies where they ask physicians, ‘How good are you at this?’ or ‘How well do you know this?’ regarding palliative care, and physicians across the board overestimate how much they know and how good they are at things.”
