Features

Finding Comfort

Finding Comfort

 

“Everyone knows they’re going to die, but nobody believes it. If we did, we would do things differently.”
—Morrie Schwartz, in Tuesdays with Morrie, by Mitch Albom

John Gregory ’53 practiced cardiology and was a clinical professor at Columbia University until 1999, when he became director of the Palliative Care Program at Atlantic Healthcare’s Overlook Hospital in Summit, N.J. In 2006 he was appointed administrative medical director of Atlantic Hospice. His son John is a pediatric oncologist in the Atlantic hospital system and has been a driving force in establishing family-centered care for critically ill children. His wife, Alice, is a nurse, and two more of his five children are also in the medical field.

Ironically, he shares a name with another John Gregory, the 18th century Scottish physician-philosopher considered to be the first medical ethicist, who wrote that being frank with seriously ill patients was a “painful office” and one of the “most disagreeable duties” of the physician. Gregory has found that duty very meaningful.

In 2008 he was honored by the Karen Ann Quinlan Memorial Foundation for his vision and his dedication to bettering end-of-life care.

What is palliative care?

Sometimes called comfort care, palliative care is a specialty that offers seriously ill patients treatment for their symptoms. Our team approach deals not only with the physical problems, but with spiritual, psychological, and social issues. We also help families deal with issues their loved ones face. Palliative care is for patients who are not necessarily at the end of life, but need help managing their symptoms.

It grew out of the hospice philosophy and program that evolved in England in the late 1960s and spread to the United States in the mid-1970s. The goal is similar to hospice, but it is not dependent on prognosis and can be provided at the same time as curative treatment.

How did you evolve into your current role?

I have been involved with the Bioethics Committee of Overlook Hospital from the start, and have served as chair for some time. When the committee first evolved, we spent a lot of time learning about death and dying. Our bioethics consultations frequently involved decision making about goals of care at the end of life. We were trying to get at what a patient whose prognosis was not very good would want in that situation. That gradually evolved into Overlook Hospital’s palliative care practice.

What happens in a palliative care consultation?

Members of our team meet with the patients and their families, and sometimes a chaplain or social worker. We talk with the physicians who are caring for the patients and get their viewpoints, so we can explain what the professional caregivers are thinking. There are often several different specialty physicians involved in the care of the patient, and the communications can be confusing to families. We give them a chance to ask questions and have them answered. We make sure they have all the information they need to make decisions, and we try to guide them along the appropriate pathway, to work out goals that are appropriate for that patient.

What’s the family response?

In general, they’re very grateful for our help and input. Many times the family has not had these kinds of conversations. Even if they have, these are still difficult decisions for family members. It’s not an easy topic for people to talk with their children about, or children to talk with their parents about. What can be done to make the process easier?

Advance directives, living wills, healthcare proxies, and so forth, are the ways we encourage families and patients to have a plan in the event that they become seriously ill. The Patient Self-Determination Act passed in 1990 states that hospitals must ask patients if they have an advance directive and offer them the opportunity to develop one, if they wish.

We developed a video called “Anna’s Story.” It involves an elderly patient who is brought into the emergency room with trouble breathing. She winds up in intensive care on a ventilator, and a lot of things happen that, in retrospect, she wouldn’t have wanted. We use this as a teaching tool to facilitate discussion in our lectures at the hospital, and in presentations to local groups.

Are there consequences of not planning ahead?

Patients can sometimes receive excessive treatment when the prognosis may indicate that the chance of survival is not very good, where the burdens of the kind of high-tech care that now exist might outweigh the benefits. There’s a lot of suffering that goes on when patients become unable to express what they would really want. Younger people tend not to worry about those things; yet an accident could cause them to become comatose or otherwise unable to speak for themselves. Ideally, all patients would have had a conversation with someone who can speak for them, so that they don’t lose the right to choose their medical care. The best time to do that is in a physician’s office, when an individual is not critically ill.

What changes have you seen in this field?

Mainly, that it’s become a specialty. There are fellowships, residencies, conferences, and professional associations. They are now teaching end-of-life care in nursing schools and medical schools. All of that has evolved over the last 10 years or so. There’s also been a huge educational effort to make the public aware that such services are available. But there’s still a lot of education that needs to be done.

Some misinformation came about during the national discussion on health reform that was very distressing for caregivers in the palliative care movement. Our goal is to determine patients’ wishes and do what they want. This was totally misrepresented. In the United States, euthanasia is not accepted at all. Only a few states allow physician-assisted suicide, which involves writing prescriptions that could be taken by patients who choose to end their own lives. Many people in the field feel that if you offer good palliative care, there shouldn’t be a need for physician-assisted suicide, or that the desire for it would be relatively rare.

What other issues need to be addressed?

Hospice provides a beautiful caring for patients, and a lot of people who are near the end of life miss out on it because they aren’t referred early enough. Hospice is a benefit that is supposed to be given when patients have a prognosis of less than six months, but 35 percent of patients referred to hospice die within seven days of being placed there. Enrolling in hospice often is looked on as giving up, and no one wants to give up. But it’s a time when patients can be relieved of a lot of the burdens they suffer near the end. If they’re only getting that for three or four days, they miss a lot of the benefits, which are really wonderful for patients and families.

Maintained by webmaster@wpi.edu