You don't need to be in pain to ask about palliative care. Physical pain that is not managed well, prolonged discomfort, or just feeling emotionally overwhelmed often triggers a request for help. But families should not be limited by those parameters. "You can call on a palliative-care specialist because you have an illness that may take your life someday," explains J. Randall Curtis, a pulmonary and critical-care specialist and director of the Harborview/University of Washington end-of-life care research program. Palliative-care experts, he says, provide a range of support services and also help patients talk about their values and goals as they relate to medical care. The best time to ask about palliative care? With any new diagnosis of a serious illness or when admitted to the hospital, Shumacher says.
Hospice care, a type of palliative care, does not always spell the end. Hospice also tends to a person's comfort and emotional and spiritual well-being, but without the treatments to prolong life or aggressively treat disease when illness is considered terminal and death seems inevitably near. The Medicare Hospice Benefit, which provides the vast majority of hospice coverage—though private insurers and Medicaid do, too—requires two doctors to certify that, to the best of their knowledge, the patient is not likely to live six months. About 90 percent of people in hospice choose to die at home, explains Shumacher, where care is usually given by family with the support of social workers, nurses, physicians, home health aides, bereavement counselors, spiritual counselors, and volunteers.
But some patients' health stabilizes, or even improves, in hospice. One misconception, says Meier, is that "hospice is a one-way ticket out of town—it's not." She has had a number of patients who've done better under the coordinated care of hospice and whom she has taken "off benefit" in order to get them, say, a new heart failure protocol to treat the disease. Should her patient take another turn for the worse, hospice becomes available again. "You need a doctor who knows how to work the system on your behalf," says Meier.
Clinician advocacy can be hard won. Doctors and nurses not trained in palliative care may tiptoe around a difficult conversation about a bad prognosis or pending death or avoid it altogether. Overall, medicine has "not done a very good job of training clinicians in [talking to patients about their] prognosis, end-of-life care, or treatment preferences under difficult circumstances," says Curtis. The default, he explains, is often to provide more and more aggressive treatment, which ultimately sends critically ill patients down a trajectory to the intensive care unit, unable to convey their own wishes. Exhausted families can feel especially overwhelmed with decision-making in these cases, Curtis says.
Early conversations are critical. Undoubtedly, discussion of a patient's desires and values concerning medical care in certain situations—say, when a feeding tube or mechanical ventilation is required to keep the person alive—can be emotionally fraught and hard for families to initiate when such possibilities feel real. What matters most, Curtis argues, is not necessarily making decisions in advance about a list of possible scenarios but rather patients discussing with their families and care teams their values and goals, what they hope for in treatment, and the minimum quality of life they find acceptable. Talking earlier rather than later in the course of an illness can soothe family stress. Palliative-care specialists can help guide such conversations.
Misperceptions about how you'll be viewed can impede the care you want. Patients may be reluctant to inquire about palliative or hospice care for fear their doctors will provide less thorough care, says Curtis. Or families may be worried doctors will think they've given up on their loved one. Simply asking means neither. Curtis suggests starting a conversation with nurses and doctors with: "I'd like to talk about what we'd do if these treatments don't work," or "I want to make sure if we're going to do all this, there's a reasonable chance we're going to get" some improvement. Opening this dialogue can help patients become more empowered in their care decisions and ensure that their personal values are respected. Families, too, can benefit greatly from understanding exactly how their loved one—the patient—thinks and feels. Should he or she become unable to participate in care decisions or pass away, family members may gain peace of mind in knowing they made decisions that honored their loved one. Broaching these difficult topics with a sick loved one, says Curtis, "can be incredibly freeing for family members."