One-Time Educator Now Teaches About Hospice Care

After Donald Schumacher graduated from college, he took a job teaching at a high school in his hometown of Buffalo, N.Y. His father, who worked at Prudential Insurance for 40 years, expressed disappointment that his son had not gone into real estate or another field where he could show off what his father called his “natural ability to close a deal.”

Years later, however, Mr. Schumacher’s business instincts would end up propelling him to the top of his field. After teaching for three years, he went back to graduate school, became a psychologist, and for the last 13 years has managed a 600-patient hospice in Cheektowaga, N.Y., outside of Buffalo. Starting in November, he will be the new chief executive of the National Hospice and Palliative Care Organization in Washington, a group with a 30-person staff and a budget of $6.5-million.

The national organization serves approximately 2,400 member hospices and pain-relief programs. It acts as a clearinghouse for information for its members and as a political-advocacy group in Washington. It also seeks to educate the public about options for end-of-life care. The group believes that many patients would benefit from hospice care. Yet many do not understand how it works or realize that Medicare pays for up to six months of services.

Modern-day hospices first started cropping up in England in the mid-1960s. The idea quickly caught on in the United States, and by 1982 had become so widely accepted that Medicare began paying for patients to use them, fueling their growth even further.

Their basic purpose, according to Mr. Schumacher, is to provide compassionate care to patients suffering from late-stage terminal diseases. Patients receive treatment to reduce their pain, and spiritual and psychological support.

The first hospices emphasized quality of life instead of medical treatments in hospitals and other similar institutions. Today most hospice care takes place in patients’ own homes.

Mr. Schumacher’s hospice works that way, bringing services to the homes of 90 percent of its patients. The average treatment nationwide lasts 38 days. Altogether, about 20 percent of deaths in this country occur under hospice care. As head of the national organization, Mr. Schumacher hopes to raise money to publicize the work of hospices and encourage more patients and their doctors to make use of the service.

Mr. Schumacher says he hopes, at age 52, that this will be his “retirement job.”

In an interview with The Chronicle, he spoke about how to help people who are dying, his own career path, and his new position in Washington.

How did you get into the hospice business?

In my late teens and early 20s I had two very difficult deaths in my life: my grandmother and my best friend. I did not have the opportunity to speak with either one of them about dying. While I was starting my master’s degree in counseling, I heard Elisabeth Kübler-Ross, who wrote a famous book called On Death and Dying, speak about the dying child, the impact of death on families, and how to communicate with the dying. I decided that was going to be my field. Later, I recognized the need for a hospice in my community and started Hospice West, in Waltham, Mass.

When did you decide to become a full-time manager?

I was trained as a clinician. But I inherited business skills from my father. That’s the ying and the yang of my professional life. In the mid-1980s I decided that I would feel much more comfortable being a manager.

Is it hard to raise money for end-of-life care?

It’s the opposite. Most families cared for by a hospice are incredibly gracious and generous. When the hospice team walks in the door, anxiety goes down. We don’t ask people for donations immediately. We give them a sheet with opportunities for them to help, including volunteering, recommending the hospice to others, and making donations. Oftentimes, they begin a relationship by leaving a call for donations in their death notice. We do not ask them directly for more money until they indicate an interest in giving.

What’s the most burning public-policy issue confronting hospices, and what do you plan to do about it?

Patients come in way too late. They have been at home, without hospice services, and are often in pain and having a difficult time with family dynamics. We want to educate physicians about hospice care and get Medicare to pay for a palliative-care consultation that can be provided when a terminal disease is first diagnosed.

Why do you think hospices are used too late in the dying process?

For many patients, there’s the desire to stay alive and keep fighting for as long as possible. We have such a youth- and beauty-oriented culture. Those values make conversations about death difficult to have, even with physicians, who put them off and make late referrals. Other patients are being cared for in health agencies where there is no natural referral system.

Do hospices have trouble serving minorities?

There’s a cultural-diversity issue that needs to be better understood. There’s a real sensitivity at the time a patient is referred, especially among African-American and Hispanic patients. We can tell by the number of patient referrals that we have not done a thorough-enough job bringing in people of color. We will encourage hospices to increase the cultural diversity of their staffs and to improve the messages that they are giving to local communities.

What’s the best way of bringing up the subject of dying?

It’s hard to bring up. At our program, we prefer to think of it as a plan for living as opposed to a plan for organizing dying. We craft messages that, while acknowledging the inevitable, don’t scare people or make them feel morbid, but focus on ways to enjoy the activities that they are still able to do. We have people come into our program after struggling with difficult treatments like chemotherapy. When they come into the program, and end those treatments, they feel healthier and happier and often get better at first. One of our ads says, “This is not for people who think that hospice means giving up,” and shows a young girl playing with her grandfather. Another shows a husband and wife dancing. The message is, the sooner you come into hospices, the healthier you can live your life, instead of waiting until the last 20 minutes.

Do you think that Americans handle death in a healthy manner?

We have a death-denying culture. But in the year 2000, hospices served over 700,000 individuals nationally. That indicates that many Americans accept that the end-of-life movement is beneficial and appropriate at some point for some diseases. The success of hospices is described in chapter and verse in the answers we get back on our questionnaires to families. But it is still hard for many people to accept that they are dying.

ABOUT DONALD SCHUMACHER, INCOMING CHIEF EXECUTIVE OFFICER OF THE NATIONAL HOSPICE AND PALLIATIVE CARE ORGANIZATION

Education: Received a doctorate in psychology from the Massachusetts School of Professional Psychology, in Boston, a master’s in counseling psychology from the State University of New York at Buffalo, and a bachelor’s degree in English from Canisius College, in Buffalo.

Previous employment: Has been president of the Center for Hospice and Palliative Care, in Cheektowaga, N.Y., since 1989. From 1980 to 1989, he was president of Hospice West, in Waltham, Mass. Taught high school for three years between college and graduate school.

Charitable interests: Serves on the board of the Peter C. Cornell Trust, a family foundation in Kenmore, N.Y., that gives money to health and human-services efforts. Also a board member of AIDS Community Services of Western New York and of the Western New York chapter of Gilda’s Club, a cancer-support group named after the comedian Gilda Radner.

Hobbies: Theater, movies, reading historical fiction and nonfiction.