Comforts of Home Longer Life Leads to Tough Questions — and New Models of Care

To many people, the concept of palliative care brings up thoughts of lying on their deathbed. The truth is, it could keep them away from it — at least for awhile.

A recent study at Massachusetts General Hospital divided a group of stage 4 lung cancer patients into two groups; all of them received traditional chemotherapy through a physician, but half also enjoyed the services of a palliative care team. The results, published in the New England Journal of Medicine, were striking.

For the patients receiving palliative care, “there was a statistical difference in the amount of anxiety and depression and the global assessment of their overall quality of life,” said Dr. Sean Mullally, an oncologist and hematologist with Northampton Oncology-Hematology Associates. “Then, on top of that, the patients who had received palliative care from the start averaged a three-month survival advantage.”

The study is one more light of public awareness shining on palliative care and the related field of hospice care, which, in broad terms, focus on the comfort of terminally ill patients, rather than only the cure.

In fact, end-of-life care — and what constitutes appropriate treatment — is a hot topic these days, with Americans living longer than ever and the massive Baby Boom generation starting to swell the ranks of senior citizenry. It’s a tricky issue because, while doctors can extend life, often by artificial means, to a greater degree than ever, that intervention is often prohibitively expensive, and the quality of that life often dubious.

So, increasingly, patients, families, and caregivers face hard questions — not about whether doctors can add weeks, months, or years to the life of a dying patient, but about whether they should.

“From medical school on, even through the late ’90s, the mantra was, we did everything we possibly could,” said Dr. Shawn Charest, medical director of Mercy Hospice. “Doctors go in and say, ‘Mrs. Jones, if your heart stops, you want us to restart it, don’t you? You want us to do everything, don’t you?’”

As a result, he said, when a medical professional turns the discussion toward hospice or other palliative measures, and withholding certain levels of care, such as artificial ventilation or nutrition, “the first thing the patient’s family hears is, ‘we’re going to get something taken away.’

“And that’s one of the most common fears, the fear of abandonment — even more so than the fear of physical suffering,” Charest continued. “When you go in and talk about withdrawal of care, that translates to, ‘my doctor is giving up. I’m on my own; I’m abandoned.’ That creates a huge amount of existential suffering and stress.”

But handled correctly and addressed early on, the decision to accept palliative care — as the Mass General study showed — actually reduces both suffering and stress. But much more education and awareness is needed, doctors say. And as the numbers of the elderly — many chronically ill — soar over the next decade, those discussions will occur with much greater frequency.

Letting Go

Dr. Lindsay Rockwell, a medical oncologist and hematologist at Cooley Dickinson Hospital, jumped into the fray two years ago by co-authoring the book In Defiance of Death: Exposing the Real Costs of End-of-Life Care. In it, she noted that our culture has become seduced by the ability to prolong life without really considering the financial costs, which are borne by everyone, of the technology that allows us do so — not to mention the quality-of-life questions surrounding such efforts.

“We have, as a medical culture, moved away from being able to differentiate when it is time to allow the body’s natural process of death to occur and when it is appropriate to intervene — and sometimes that line becomes blurred,” she told the Healthcare News when the book was first published. “So much of our training as a physician is in keeping people alive because, well, life is good.

“Sometimes, the appropriateness of that gets lost or obscured in the context of thinking that death is a failure because life is better,” she continued. “So much of our society views death as something to be avoided, rather than as something that can be embraced as much as any other part of life.”

Proponents of palliative care want to help patients and families embrace that transition with as much dignity and comfort as possible.

In any discussion of such care, it’s helpful to understand the differences between palliative care and hospice care. While both share the philosophy of maintaining and managing a patient’s comfort and quality of life — and both can be delivered in either a care facility or a home setting — palliative care doesn’t preclude curative treatment, and is not limited to patients with very short life expectancy.

Hospice, however, is strictly for patients who, according to a doctor’s determination, can no longer benefit from curative treatment; they are typically in the final stages of a terminal illness, although not necessarily in their final days or weeks. In short, the goal of hospice care is strictly to minimize discomfort, and not to cure the incurable.

“I’m a strong believer in hospice and palliative care,” Mullally said. “I discuss hospice very early in the course of somebody’s illness if I know it’s ultimately going to be a terminal illness, so that, when the time comes to consider signing onto hospice, it’s not such a blow.

“My feeling is,” he added, “if someone has metastatic cancer and is at the point where traditional medicine is not a reasonable option, that is a good time to get hospice into the house. It’s helpful to the hospice nurse to get to know the patient when he’s doing well so they can recognize the signs and symptoms when he’s not so well.”

David Mol, executive director of Noble Visiting Nurse and Hospice Services, agreed that there are good reasons to introduce palliative options early in the course of a terminal illness.

“One of the things we typically hear is, ‘we wish we had known about hospice sooner,’” he said, partly because of the way hospice services help families prepare for a loved one’s death. “When they’re with us only a week, that really doesn’t happen. A lot of people think you have to be on your deathbed to have hospice, but that can’t be further from the truth.”

Another common misconception is that most hospice patients have cancer, said Jennifer LaPierre, Noble’s manager of clinical services. “It’s actually one of the least-common diagnoses we experience,” she explained. “We have patients with all types of conditions, not just cancer patients. They’re all people who choose to live at home with family while getting quality care; that’s hospice.”

Treatment modalities are constantly evolving within hospice care, Mol said. For example, acceptance of so-called ‘alternative’ treatments is growing. “We’re seeing a lot more going to things like massage therapy for pain control, instead of using drugs that they might not be able to tolerate. Music therapy is another option we’ve used.

“It’s the holistic approach, looking at the whole patient, the whole family,” he added, noting that his company continues to work with families — through the grieiving process and other issues — for a year after the patient dies. He added that the shifting face of family life complements the goals of hospice care.

“As the economy changes, people are going back to more multi-family living,” he told the Healthcare News. “I have my own parents living with me. The whole dynamic of families is changing.”

Cost of Living

In 1998, Charest said, there were about 300 hospital-based palliative care programs in the U.S., and that number had almost quadrupled by 2004 — and has grown steadily ever since. Today, more than half of all hospitals with at least 50 beds have such a program — including 80{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of all hospitals with at least 300 beds.

Charest cited research, reported in 2008 in Archives of Internal Medicine, that shows considerable cost savings in moving patients from a higher-acuity setting, such as an ICU, to a lower-acuity setting.

“But cost is a secondary benefit, not the primary one,” he stressed. “The primary intended effect is not to save money, but to provide the right care to the right person at the right time. If you have a patient with advanced dementia in the ICU, mechanically ventilated, that’s extremely burdensome on the family, and the patient might have a higher risk of dying completely sedated, ventilated, and unable to communicate. And that type of outcome is what families will remember.”

Charest, like most in his field, is a believer that both curative and palliative care have their place in the management of patients, and is gratified when families understand that palliative care isn’t about withdrawing treatment, but adding another level.

“Hospice extends a patient’s life because the immediate symptoms are addressed right away,” Mol explained.

“I think there’s an evolution happening, as people are understanding hospice better; they’re not looking at it as a death sentence,” he added. “We’re seeing more people who have done their research, who are computer-literate, and are looking up different things about hospice. They’re coming in with a lot more knowledge.”

Widespread acceptance of hospice and palliative care, even if it comes slowly, will represent a significant cultural shift, Charest said.

“With the Baby Boomers, there’s expected to be a huge peak in chronic illness over the next decade — not just cancer, but heart and lung diseases, chronic neurodegenerative diseases,” he noted. “All of us would like to die at home, but 53{06cf2b9696b159f874511d23dbc893eb1ac83014175ed30550cfff22781411e5} of Americans are still dying in hospitals. We’re trying to shift that.”

And to provide a measure of comfort and dignity along the way.