If Death could hire a PR agent, he would do well to choose Suzanne O’Brien. A Pine Plains-based hospice nurse and motivational speaker with a fiery passion for her work, O’Brien is attempting what is perhaps the ultimate public image makeover. She’s looking to transform the way we view and handle the end of life—taking the fear and denial out to reveal it as the natural, beautiful process it was meant to be. It was while tending to patients at a hospital oncology unit less than 10 years ago that she found her calling. “I was blown away by how the medical profession in general was treating patients with interventions and procedures until literally the person’s last breath,” says O’Brien. “I’m talking about people who you know, and the doctors know, are not going to get better. I would see these beautiful elder people having poison pumped into their veins, or hooked up to machines. They couldn’t eat; they were so weak. And I thought, ‘What is going on here? It doesn’t have to be this way.’”
Slowly, the medical world is owning up to the fact that the way we handle end-of-life care has to change. Palliative medicine—or supportive care that does not attempt to cure but instead manages the symptoms of any chronic progressive disorder—is so new that it didn’t exist in this country until about 15 years ago. Hospice, which started in England as a grassroots movement set in motion by a nurse-cum-physician named Cicely Saunders, didn’t become standard in the US until the 1980s. The two fields often (though not always) go hand in hand, as many palliative-trained doctors work through hospice teams—a network of physicians, nurses, social workers, spiritual counselors, and music and art therapists trained in easing pain and allowing patients to live as fully as they can until the end. It’s a valiant goal, preparing people for one of the most important journeys of their lives, but hospice often gets a cold reception initially. “Hospice doesn’t mean hopeless. It’s about living, not dying,” says O’Brien, whose recently published book Life, Love and Transition: Guidance for the End of Life takes root in her experiences as a hospice worker. Yet for various reasons, resistance to this kind of model persists. Many people don’t realize that palliative care is even available. (Imagine: an entire branch of medicine dedicated to keeping you comfortable under any conditions.) And most terminal patients arrive at hospice too late to fully receive its end-of-life-enhancing benefits. If people like O’Brien have anything to do with it, this won’t always be the case.
There’s a story that O’Brien likes to tell about two men in their eighties, both diagnosed with lung cancer within a month of each other. Robert, a businessman in Boston, went into aggressive treatment immediately; surrounded by top physicians, he hardly gave a thought to the decision and put his trust in the paternalistic medical system. Lee, a psychologist in New York, said to himself, “Okay, I’m 80 years old. I’ve had a good life, and this is what it is.” He enrolled with hospice and went home to his wife. Robert, meanwhile, was in and out of the hospital many times. A few months into his treatment, his doctor said the present chemotherapy wasn’t working and started him on a new one. Lee was at home doing things in his garden, seeing family and friends; a hospice nurse came to visit once a week. Initially, he wasn’t having a lot of symptoms. But Robert really took a hit from his treatments. He missed a lot of family functions and was very pale. Robert died a little over a year after his diagnosis; Lee was still alive and making jokes. He was getting weaker but it was a slow progression; he could still connect with his loved ones. He lived a just few months longer than Robert, but his last year was a full one.
Whether it’s better to choose hospice over aggressive care is not exactly O’Brien’s point. “I just want people to know that they have choices,” she says. The feeling is similar among palliative care physicians, who often find themselves at odds with the standard medical infrastructure. “‘Keep fighting until the end’ is the idea of some doctors and some families,” says Eugene Perlov, MD, a palliative care doctor in Manhattan and a weekend resident of West Hurley. “Doctors are trained to save lives and do as much as possible. But it should be discussed. Given the choice, many people would just stay at home and pursue less aggressive treatment.” With lack of awareness, however, and sometimes surrounded by families that are not ready to let them go, most patients find themselves swept up into the seemingly unstoppable momentum of Western medical interventions. With $3,000-a-day intensive care and $5,000-an-hour surgery upholding the system, the economic incentives are hard to ignore. Yet other forces are at work too. Often, patients have not written advanced care directives (such as do-not-resuscitate orders, or the assignment of a health care proxy), so the medical system shifts into default mode to keep them alive at any cost. “I want to empower people,” says O’Brien, who has taken her message to local rotary clubs and other groups. “I don’t want another person who didn’t want to be in a hospital at the end, to be treated at the end, to be there.”
The Rise of “Comfort Care”
As palliative care and hospice both gain ground, new research is revealing their benefits in surprising ways. In a study of 4,493 Medicare subjects in hospice, patients with congestive heart failure lived an average of three months longer than non-hospice patients. A Massachusetts General Hospital study showed that integrating palliative care early in the treatment of patients with advanced lung cancer not only improved their mood and quality of life but also extended their lives by almost three months. And in some rare, lucky cases, simply having comfort care on hand can help defy the odds of what seem to be the direst situations. Ruchira Chandra, MD, hospice medical director for Dutchess County and a palliative care consultant at Vassar Brothers Hospital, has seen patients who were told they had two weeks or two months to live go on to survive for a year or more with the hospice program. One of her patients was a woman in her seventies with chronic obstructive pulmonary disease who wasn’t expected to survive much longer. After she enrolled with hospice and received at-home symptom management, her condition stabilized enough that she could live comfortably and go out to eat occasionally (portable oxygen in tow); she survived this way, amazingly, for a year. “This was someone who was being hospitalized almost on a monthly basis before we got involved,” says Chandra.
To enroll in hospice, you need a doctor to say that you have a life expectancy of six months or less. But rather than a death sentence, hospice can be a life extension cord in some cases. Still, if choosing hospice seems too much like giving up, palliative care is an option at any stage—and can even be pursued alongside aggressive treatment. “The issue should be discussed at the time of diagnosis for any debilitating disease,” says Chandra, who adds that patients usually don’t get to her until too late. “Palliative care focuses on your quality of life, not just the end of life.” Talking with the patient to determine what he or she needs is an essential component of the palliative approach, which aims to treat the whole person. After discussing goals with a patient, Chandra will often look at the person’s prescribed medications (“Polypharmacy, or too many medications causing side effects, can be a problem,” she says). A “comfort pack” containing morphine, anxiety medications, and other remedies might be provided instead, especially to hospice patients, with the purpose not to treat disease but to keep the patient comfortable in later stages. Yet often Chandra will find that pain goes beyond the merely physical. “It might be ‘total pain,’ which can also be spiritual or psychological,” she says. “We address this too, and focus on everything that the patient wants or needs.”
The way we live may differ vastly from person to person, but when it comes to our passage out of this world, most people want exactly the same things. Surveys of patients with terminal illness reveal a common wish list: All want to die free of pain and suffering, without becoming a burden to others. We prefer to die peacefully at home, mentally clear and with loved ones by our side, rather than hooked up to machines under bright hospital lights. Yet our culture often fails to deliver these ultimate requests. Instead, sometime over the last one hundred years, death has been medicalized—and perhaps it’s our collective fear that keeps us quietly complicit in the process. “In society in general we don’t talk about death or illness or dying; it’s hush-hush,” says O’Brien. “So when it does come up, unfortunately it makes for a very unhealthy passing, because everyone is dealing with their own issues and can’t be present for that loved one. For something that is a natural part of our journey, to not be able to talk about it is an injustice to all of us.”
There’s an ease emanating from someone like O’Brien, who has walked so many people to the end of their path—who has looked death in the face and said there’s nothing to fear. “I’ve seen some really beautiful experiences,” she says. “There’s something called the spiritual eye; there’s an energy around the person that becomes prominent toward the end of life. They have a knowing. I’ve seen people figure out what this life thing is about. They realize it’s about unconditional love—learning to give and receive it. They have these aha moments. ‘Oh, I get it!’ The lessons, the hurt—that’s all part of it in order to learn to forgive and come to a higher place.” Simply by starting the conversation, suggests O’Brien, we can loosen the fear grip and neutralize the stigma that holds us back from receiving these powerful messages. “People need to hear about the beauty; they need to not be afraid, because we’re all getting there,” she says. “This is what I hope: that everyone has what you call a good death. What makes a good death is a good life. No regrets. Live passionately every day and love the people that are around you. And that way when your time is called you can say, Okay.”
Join Suzanne O’Brien at the Rhinecliff Hotel at 7pm on May 18, in an event to benefit the Africa Hospice Initiative, providing end-of-life care to Zimbabwe communities
ravaged by the HIV/AIDS epidemic. For information, call (845) 337-0389.
Suzanne O’Brien, RN, Lightenup444.com
Ruchira Chandra, MD, (845) 483-6428