It is unfortunately very common for patients and families entering hospice care to be ill-informed as to what hospice is about as well as why the doctor recommended hospice to the family. The NYT’s blog, The New Old Age, has a piece describing this sad phenomenon. The author describes how it is often the hospices finding themselves in the position of breaking the news to the families, which, if one thinks about, causes a further fear of hospice. If hospices have to be the one to explain that someone’s loved one will die, then that will add to the stigma that hospice=death without understanding the benefits hospice provides during the final period of life.
It is clear that the disservice begins with the physicians, who feel uncomfortable or incapable of having blunt conversations with patients and families. The physician avoid the conversation due to the fear and guilt associated with breaking the news that someone is dying, for the perception might be the physician failed in the mission.
Informed consent is one of the greatest gifts a physician can provide. A person who knows what is happening and can help shape the plan for care during the dying process will more likely experience a smoother transition. And isn’t that what hospice is about, the smooth, comfortable transition from this life to what awaits after physical death. People aware of their dying have more of the opportunity to discuss this with their families, those left behind. The grieving process might not be radically different but the comfort the family will find in being able to accompany a loved one on this journey will be immense.
At Home and Hospice Care of Rhode Island, where she’s a medical director, Dr. Joan Teno has grown accustomed to patients being admitted with no clear understanding of their condition or prognosis. “The oncologist has told them, ‘It’s time to take a holiday from chemo,’” she said. “It’s a way not to have a conversation he or she finds hard to do.”
So the hospice staff has to explain, compassionately but directly, what the physician didn’t say: that chemotherapy isn’t working. That the cancer isn’t curable or effectively treatable. That death is near.
Is this too scary a discussion? Too apt to cause the patient grief or fear, or torpedo the family’s hopes?
A Swedish study of patients with terminal cancer, just published in The Journal of Clinical Oncology, provides a solid argument to the contrary.
“In Sweden, we have what we call a breakpoint conversation, a communication about the transition to end-of-life care,” Dr. Gunilla Lundquist, a palliative care specialist at Umea University and lead author of the study, told me in an interview. At the breakpoint, the goal changes from prolonging life to providing comfort and physical, psychological and spiritual support. “It can be days, it can be weeks, even months until death, but you know it’s a short time,” Dr. Lundquist said.
To learn the effect such breakpoint discussions had, the researchers compared about 1,200 cancer patients who’d received “information about imminent death” with 1,200 who hadn’t; in both groups, patients’ median age was in the late 70s.
(These subjects were found through a national quality register for end-of-life care, established in 2006, which is one way you can tell this is not an American study. Another way you can tell: Of the patients on this register, more than 90 percent had been informed that they were close to dying.)
In the last week of life, the informed group didn’t suffer more pain, anxiety, confusion, nausea or respiratory problems; such symptoms were well controlled in both groups. And in some ways, those who’d had their prognoses clearly explained fared better. They were more likely to have drugs already prescribed for use as needed, eliminating last-minute scrambling. They were far more likely to die in the place they preferred (70 percent) than the uninformed group (39 percent). Their families were significantly more likely to be offered bereavement support.
“The health care personnel were more aware of the patient’s wishes” after a breakpoint conversation, Dr. Lundquist said. “They knew the preferred place of death. In the uninformed group, they didn’t know as much.”
In this country, we tiptoe around the D-word until so late in the game that even now, when more than 40 percent of Americans die under hospice care, about half do so within two weeks of admission. Even expert hospice teams can’t provide many of the elements of a good death — and they believe there is such a thing — in mere days.
We can blame some of this evasiveness on physicians, trained to save lives. But families bear some responsibility, too; they may not seek or seem to welcome a frank assessment. Either way, while many patients do have breakpoint conversations, ignorance often rules.
In a study Dr. Teno co-wrote, of patients with advanced dementia — a terminal disease, remember — only a quarter of their health care proxies knew that their loved ones had a life expectancy of six months or less. The patients whose families did grasp that reality were much less likely to undergo “burdensome interventions” like feeding tubes.
But the consequences aren’t merely medical. “Discussion is delayed to the point where the dying patient and family don’t have the opportunity to say, ‘Goodbye, forgive me for my mistakes, and I love you,’” Dr. Teno explained in a separate e-mail. And most Americans still die in hospitals, though they overwhelmingly say they want to die at home.
“How we’re going to change physician behavior is the million-dollar question,” Dr. Teno told me. But we can help by letting doctors know that we want to know. Much earlier in the process, we can ask for their opinions about what’s likely to happen, how quickly, and what the best options are for comfort and palliative care. We can say the word “hospice” and ask for a referral. We can say the D-word, too.
That these are difficult conversations for all parties is indisputable. Dr. Lundquist’s next study will focus on the timing and content of those breakpoint communications. In the meantime, though, her studies and others show that it’s not detrimental to patients and families to understand the truth and to prepare for death. On the contrary.