This year, New York became the second state to enact a law requiring health care providers to provide information on end-of-life options to terminally ill patients. California was the first; the Right to Know End-of-Life Options Act has been in effect there since January 1, 2009. New York’s Palliative Care Information Act took effect on February 9, 2011.
What do these laws mean, to whom do they apply—and in a larger context, is it possible to legislate one of the most difficult and intimate conversations a health care provider can have with a patient?
It’s the Law, But What Does That Mean?
First, the facts about these laws:
California’s Right to Know End-of-Life Options Act states that “when a health care provider … makes a diagnosis that a patient has a terminal illness, the health care provider shall, upon the patient’s request, provide the patient with comprehensive information and counseling regarding legal end-of-life options … and provide for the referral or transfer of a patient ... if the patient’s health care provider does not wish to comply with the patient’s request for information on end-of-life options.”
The law defines a “health care provider” as an attending physician or surgeon. However, it is further stipulated that the phrase “also means a nurse practitioner or physician assistant practicing in accordance with standardized procedures or protocols.”
New York’s Palliative Care Information Act states that “If a patient is diagnosed with a terminal illness or condition, the patient’s attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate to the patient, including … prognosis, risk and benefits of the various options; and the patient’s legal rights to comprehensive pain and symptom management.”
The state Department of Health further clarifies that physicians and NPs are subject to the requirements of the law. PAs and other health care professionals may also, consistent with their scope of practice, provide information about these services but are not required to do so.
It is unclear how much of a difference these laws will make. In California, there has not been a noticeable flurry of concern or activity in response to the law; some clinicians haven’t even registered its existence on their radar. In a state facing an ongoing and major fiscal crisis, enforcing this type of law probably is not going to be a top priority.
New York’s law was passed despite protests from the medical society, which felt that parties that would be directly impacted by the law were not sufficiently consulted on its import and implementation. In May, two physicians from Maimonides Medical Center in Brooklyn wrote in the New England Journal of Medicine that “Physicians and health care organizations are struggling to understand what the law requires.”
Whether such laws are enforceable or effective in and of themselves, they do serve another purpose. They remind us of a largely unmet need in patient care: the need for an open and honest discussion about the end of life.
Shattering Hospice Myths
Medicine is about healing. Someone becomes sick, and the clinician strives to make him or her well again. But there are devastating diseases about which we don’t know everything, and for many of them, a full-blown cure is not yet available. Even where life can be prolonged, death is never completely vanquished. Everyone knows that, but it is not easy to accept.
“Because most people die in old age, these issues get a lot of attention in the geriatric medicine arena—but this is across the lifespan,” says Freddi I. Segal-Gidan, PA, PhD, Co-Director of the Alzheimer’s Research Center of California at Rancho Los Amigos National Rehabilitation Center in Downey. “Many people spend a lot of money in their last months of life because we are a very interventionist medical society. And we still believe that we can cure and save everybody.”
“It’s true that we can always do something more,” says Karen Ayers, ACNP, who works with Hospice of Humboldt in California. “But is it futile? Is it going to work? Or is it just going to flog somebody? That’s really the question.”
Americans have already proven that they are not ready for a discussion of the financial aspects of treatment for terminal illnesses and other chronic, life-shortening conditions. (Recall the “death panels” propaganda?) But the larger issue is how individual patients would prefer to die, if “in my sleep, at a very old age” is not possible.
Some are inclined to fight until the last moment; if two rounds of chemo didn’t do the job, well, let’s try a third. Others would prefer to be as comfortable as possible for the remaining days/weeks/months of their lives. Most do not want to spend the end of their lives hooked up to machines in a hospital.
The question is whether patients know that they have choices and really understand what the options are. There are often misperceptions that when a clinician brings up end-of-life care, it is because he or she has “given up on” the patient.
“People think when you talk about end-of-life care that means ‘We’re going to give you morphine until you go into oblivion, and then you die,’” says Debbie Miller-Saultz, DNP, FNP-BC, of the Department of Pain Medicine and Palliative Care at Beth-Israel Medical Center in New York City. “And people think the morphine is causing someone to die faster. But all of those myths are really quelled when you talk to people who have palliative care, because they are offered services in a way that is timely and that provides much more support. People aren’t distressed or living in pain.”
By way of evidence, Miller-Saultz cites a study published last August in the New England Journal of Medicine (2010;363:733-742). Researchers at Massachusetts General Hospital randomized patients with metastatic non–small cell lung cancer to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone.
Patients who received early palliative care showed significant improvements in quality of life and mood, compared to their counterparts. Furthermore, while fewer patients in the palliative care group underwent aggressive end-of-life care (eg, chemotherapy within 14 days of death), median survival was higher for them than for patients in the oncologic care–only group (11.6 months vs 8.9 months).
Temel and colleagues said their results “offer great promise for alleviating distress in patients with metastatic disease and addressing critical concerns regarding the use of health care services at the end of life.”
A Tough Talk to Have
Despite such positive findings, hospice remains an underutilized resource; the average length of stay is less than two weeks. “The reality is, the hospice literature shows that people get into hospice too late,” says Segal-Gidan.
In New York State, the average length of stay in hospice is 11 days. “People have end-of-life issues and disease longer than 11 days,” says Miller-Saultz. “So that’s a big part of the problem.”
Clearly, this is part of the impetus for legislative efforts such as those in California and New York. The implication of these laws is that, left to their own devices, clinicians are not providing terminally ill patients with essential information about the services available to them. Physicians in particular have often been criticized by advocates of palliative care and hospice for pushing aggressive treatments and dismissing the other options as “not real medicine.”
Nurses’ training may make them more receptive to alternatives. “We’re not schooled to ‘cure,’ that everything you do is driven to cure,” Miller-Saultz says. “You palliate. You do pain and symptom management. To me, it’s really no different from what we do anyway.”
That may change as medical schools try to incorporate more on end-of-life care into their curricula. But knowing you need to have these conversations—and in some cases being mandated to have them—does not make the discussion any easier.
Ayers considers herself fortunate to live and work in a relatively isolated area of California, centered around Eureka. The medical/nursing professionals are used to working together and do a lot of community outreach. When the local St. Joseph’s Hospital surveyed patients and providers, for example, they discovered that patients felt they weren’t getting information about the end of their lives, and clinicians said the hospital was not the right setting to deliver that information.
“It was just too late, it was too chaotic, and the patients were too upset,” Ayers explains. “It wasn’t the right time to be having that conversation.”
From this finding came the Physician Communication Initiative (it was named before the NPs got involved). The group held a series of dinners at a physician’s house “to talk about these issues, what is tough about it, how do you do it, how do you work it into the conversation,” Ayers says, “and how can we do it better.”
The Only Certainty Is …
While not everyone lives in that kind of community, Ayers suggests clinicians in other areas reach out to local medical and nursing groups, hospice services, or other community groups that may have an interest in educating people about what palliative care and end-of-life services are available locally. Major organizations also have resources on their Web sites that may help clinicians prepare for conversations with patients (see box).
A lot depends on context. Segal-Gidan works with patients who have Alzheimer’s disease, dementia, or other neurologic problems. “I’m able to bring up end-of-life care in the context of, say, ‘You’ve had a stroke, and you’re more likely to have another one. We hope not, but if so, let’s talk about what you would want to happen,’” she says. “When people are elderly and they have multiple chronic illnesses or a degenerative disease, people realize they’re coming to the end of their life. And in some ways, these discussions are more likely to happen.”
Timing is another question. The New York law, for example, requires that information on palliative and end-of-life options be provided to patients whose life expectancy does not exceed six months. Can that really be predicted with any certainty?
“We can identify the person with Alzheimer’s disease or multiple sclerosis or cancer,” Segal-Gidan says, “but we can’t identify very well when they’re six months before death. And then it may be too late.” This is another likely reason why so many people spend so little time in hospice programs before they die.
It may make sense to encourage patients to consider the choices they would make sooner rather than later. But even if a plan of care has been established or an advanced directive has been completed, nothing is set in stone. People can change their minds; death is an emotional issue and even those who are capable of frank discussion in the abstract may feel differently when it becomes reality.
In their editorial, the doctors from Maimonides Medical Center described an elderly patient with gastrointestinal and lung cancer for whom a satisfactory care plan had been developed—or so they thought. When the patient’s condition started to decline, his daughter found that she no longer agreed with the plan.
“She had previously accepted the fact of her father’s impending death as a theoretical matter,” the doctors wrote, “but when she came face to face with the troubling reality of his deteriorating condition, her thoughts and feelings had changed.”
How patients will respond to treatment, how long they will survive, and how they will choose to end their lives—there is so much uncertainty. Yet who might have pressing need for these services typically is not part of it. As Segal-Gidan said, it is possible to identify patients with terminal illnesses or degenerative conditions (although the diagnosis sometimes comes much too late in the process). But what of the 32- or 45-year-old who survives a car accident but has a traumatic brain injury and can no longer problem-solve, process, or plan? Who will make the decisions for that person? Did he or she ever discuss with a spouse or parent what he or she would want?
“It’s when death occurs at younger ages, more suddenly or unexpectedly, or even after the course of an illness, that I think it doesn’t really get a lot of attention,” Segal-Gidan says. “The grief gets a lot of attention, but all of the things around it—preparing for it, acknowledging it as a possibility—aren’t talked about.”
It isn’t possible to predict death and it certainly isn’t possible to avoid it forever. If there is one thing that frustrates humans, it is that we do not have all the answers.