Let’s talk about death, baby

With a new bill in front of the legislature, it’s time we start confronting end-of-life issues

By Noah Bruce

NO FAN OF HOSPITALS: “I want to die with dignity at home, not being prodded by doctors and nurses every five minutes.”

It is perhaps to soon to say “Joe Mayo is dying of Lou Gehrig’s Disease.” The disease will eventually kill him and it has already confined him to a wheelchair and garbled his speech, but Mayo is still active — he serves as Clerk Emeritus of the Maine House of Representatives — and we tend to reserve the term “dying” for those for whom death is imminent.

Yet Mayo, who served as state representative from Thomaston from 1983 until 1992 and as clerk of the House until last year, does not shy away from the subject of his own death. On March 12, Mayo addressed the House, through a statement read by his wife, in support of An Act to Improve End-of-Life Care in the State. He was the only terminally ill person to speak on the bill designed to help the terminally ill.

The bill, primarily sponsored by Representative David Madore (R-Augusta), grew out of the ashes of Question 1, which would have given Mainers the right to physician-assisted suicide. During the campaign for Question 1, Madore, who opposed the referendum, asked a pertinent question. Figuring that the referendum was designed for people dealing with terrible end-of-life pain, he wondered, “Why are we at the point of physician-assisted death, but we haven’t addressed pain management?”

After Question 1 failed, Madore worked with both sides of the referendum to create the current bill. In addition to requiring private insurance companies to cover hospice care and increasing the amount Medicaid will pay for hospice, the bill commissions studies to look at pain management, end-of-life training, and the barriers to an inpatient hospice center in Maine.

For Mayo, the bill strikes home, as he, unlike the majority of Mainers, will take advantage of hospice services.

In some countries, hospice is a place one goes to die, but in America, hospice is defined more as a philosophy of care that focuses on quality of life rather than prolonging it. Its main features include a concentration on pain and symptom management; an inter-disciplinary team of nurses, doctors, clergy-members, family, and volunteers; listening to the patient; including the family in the dying process; and providing for physical, emotional, and spiritual needs.

In 1980, John Nesbitt included hospice care as one ten major future trends in his book Megatrends. He wrote that medicine had become so mechanical and technical in its approach to death that the pendulum would have to swing in the direction of a more natural dying process. The manifestation of this swing, he predicted, would be in the rise of the hospice movement.

Today there are over 3,000 hospice programs in the US, and in 1999 700,000 people died in hospice care. Yet as a movement, hospice is not even in its adolescence. Seven hundred thousand is a lot of people, but that represents only 29 percent of the 2.4 million people who died in America in that year. There is still no mandatory accreditation for hospice care. Except in California, doctors, even doctors like oncology specialists who regularly deal with the dying, are not required to take end-of-life training that teaches them about the unique physical and emotional needs people have as they face death.

In the fight for better end-of-life care in this country, Maine remains the most desolate outpost on the frontier. In 1995, Maine had the lowest Medicare hospice referral rate in the country — only 6 percent of eligible patients were referred to hospice. This statewide figure was brought down by Cumberland County, the worst county in the worst state for Medicaid hospice referrals.

Maine finally caught up with the rest of the country in one regard, becoming the 45th state in the union to fund hospice care with Medicaid — state funded insurance for low-income people — in January of this year. However, Maine medical schools do not have death and dying as a fixed part of their curriculum, and there are no inpatient centers strictly devoted to caring for the dying in Maine. The End-of-Life Care Bill is a comprehensive measure that, while no panacea, would be a major step forward in reversing Maine’s behind-the-times stance on hospice.

When his doctor feels he is ready, Joe Mayo plans on using hospice care because he feels that hospice will allow him to die a more dignified death than that afforded by the traditional health care system. “I want to die with dignity at home,” he says, “not being prodded by doctors and nurses every five minutes. They can prolong my death for a day or so but what does it matter? What does it cost in terms of quality?”

Mayo asks a critical question. What is the cost of dying in a hospital where the goal of the treatment is to keep the patient alive as long as possible? Renowned hospice pioneer and psychiatrist, Elisabeth Kübler-Ross, writes in her book, Death: The Final Stage of Growth (Simon and Schuster, 1975), “Most people in our society die in a hospital. This in itself, is one of the primary reasons that dying is hard . . . The hospital [is] a depersonalizing institution which is not, by definition, set up to meet the human needs of people whose physiological condition is beyond the hospital’s capability for successful intervention; these patients represent a failure of the institution in its life sustaining-role, and there is nothing in the system that provides for human nurturance to the soul when the body is beyond repair.”

Kübler-Ross, who made a rare public appearance at the State Street Church in Portland on March 23, wrote this in 1975, and while there has been progress in the field of death and dying, the basic life-sustaining mission of hospital care remains the same, as do the limitations of this curative mission in serving the dying.

Hospice, on the other hand, employs palliative care — care that focuses on making the patient more comfortable. This distinction, between palliative and curative, is profound and is the basis for all the finer distinctions between the two types of care. By accepting death as a normal part of life, hospice is able to serve the dying and attempt to provide as peaceful and dignified a death as possible. Curative care attempts to stave off death, but provides little or no contingency plan in the event of its failure, and, in the end, curative care is bound to fail.

Hospice tends to a patient’s emotional and spiritual needs, where curative care largely ignores them. Yet, the two philosophies of care also differ in the way they approach physical care. The distinction begins with pain management. According to Kandyce Powell, director of the Maine Hospice Council, a political and educational organization working for greater access to hospice care, someone under hospice care will probably receive better pain management than a patient who dies without hospice. “I don’t want to convey that people who work in non-hospice settings know nothing of pain management, ” says Powell, “but it’s more of a focus of hospice care.”

Representative Madore tells a story that illustrates how pain management can take a back seat in a non-hospice setting: “Last year my cousin died of breast cancer. Her elderly mother, who is 95 and only speaks French, was caring for her. She didn’t want hospice so she went to the hospital and they sent her to a nursing home. In the nursing home they were giving her morphine every couple of hours, but sometimes the nurse would come late and my cousin was in extreme pain until she got the morphine. My aunt couldn’t communicate when my cousin was in pain. So I found myself there to make sure the nurses were giving her the pain medicine on time.”

According to Dr. Jean Marie Kirschling, dean of the College of Nursing at University of Southern Maine, who has focused her academic research on death and dying, a major obstacle to efficient pain management is doctors’ fear of scrutiny when prescribing addictive narcotics. “Oxycontin is an example of a drug that no one wants to touch with a ten-foot pole. You’ve got to believe that any physician who is prescribing oxycontin with any degree of regularity is going to come under scrutiny. ”

HOSPITAL ROOM: do you want to die here?

The situation for a patient in hospice care is brighter, says Kirschling. She explains that hospice nurses often go to bat for their patients, lobbying doctors for stronger medication. “I’ve got to tell you these nurses are good and they will get on the phone with the physician,” she says.

In addition to pain management, hospice care also concentrates more than curative care on managing the symptoms that often accompany terminal illness. “Hospice works to alleviate symptoms like nausea, constipation, and shortness of breath that go along with many of the diseases we deal with,” says Powell.

Perhaps even more important than the physical aspects of hospice care are its emotional and spiritual components. Marie Aikins, the director of a home nursing service in Southern Maine that provides hospice care, emphasizes that death “is an emotional and spiritual event first, then a medical event.”

A key facet to emotional and spiritual care is tailoring the service to the patient’s needs. This begins by allowing the patient to choose where to die. In 1999 nearly 50 percent of the 2.4 million people who died in this country died in a hospital. But like Mayo, most people feel most comfortable dying at home. So that is where the majority of American hospice care takes place, though it can also be administered in a hospital, nursing home, or in an inpatient hospice center.

Regardless of where the hospice care is administered, every member of a hospice team is trained — for at least 18 hours, under Maine law — to deal with end-of-life issues, to insure that spiritual and emotional needs are met. What this means, says Jacob Watson, a hospice chaplain in Southern Maine, is that hospice workers are prepared to deal with “natural emotions.” “What happens in the end-of-life process is that natural emotions emerge. It’s natural to be sad. It’s natural to be angry . . . These emotions need expression. Anybody who has been trained in hospice, be they nursing staff, social workers, or clergy would be encouraging of these natural emotions. Hospice workers do a lot of listening.”

Powell says that compared to “the hectic pace of our health care system and focus on productivity, hospice staff and volunteers have more time with individuals and their families . . . [Dying] is a reflective time. People are dealing with introspective things at the end of their lives.”

In fact, hospice volunteers’ primary function is simply to spend time with the patient. Laura Read is head of Hope Garden, an organization working to establish a 10-bed inpatient hospice center in southern Maine, but before this she was a hospice volunteer for six years. She says the volunteer’s main job is simply to be a “presence.”

“As a volunteer I was just asked to be there,” she says “Just to listen and to be a presence, not to add anything or teach anything. But what comes out of that presence is a profound relationship.”

Finally, hospice differs from curative medicine by viewing death as a communal event; it treats not only the patient but also the bereaved family. Care for the family comes in different forms: from a volunteer relieving family members by watching the patient for a few hours to counseling provided by a clergy member.

“Part of the philosophy of hospice is to look at the family as a unit,” Powell says. “It anticipates the grief both before and after the person dies. It treats death as an important life event and follows up with family members for up to a year after the death.”

Kirschling says this differs from the way family is dealt with in a non-hospice setting. “If you get a cancer diagnosis at a local hospital,” says Kirschling “the family is not part of their primary focus. Hospice broadens the care to include the person’s family. It says ‘this is a family experience.’ ”

Powell agrees. “Bereavement in the traditional health care system,” she says “has not been something that has been recognized as important nor has it been remotely reimbursed.” For example, says Powell, a grieving family member who seeks counseling will not be covered by insurance. “Grieving is not a diagnosis that is reimbursed. They just haven’t recognized it within the health care system as an important issue.”

If hospice is such a sensible option for the dying and for their families, why is it so underutilized? Why do only 29% of people nationwide take advantage of hospice? Why in 1998, did 12,000 people die in Maine, but only 1100 were admitted to hospice care?

The answer, those who work with the dying argue, lies deep in our cultural denial of death. To take advantage of its benefits, society must be willing to talk about hospice. Doctors must be able to broach the subject with their patients, patients must be well informed of their options, and families must be able to discuss these options. The problem is to talk about hospice is to talk about death, and our society does its best to avoid the subject.

In his landmark book on the subject of death and dying, The Tibetan Book of Living and Dying (Harper, 1993), Sogyal Rinpoche, a disciple of the Buddhist master who taught the Dalai Lama, writes, “. . .People today are taught to deny death and taught that it means nothing but annihilation and loss. That means that most of the world lives either in denial of death of in terror of it. Even talking about death is considered morbid, and many people believe that simply mentioning death is to wish it upon ourselves.”

Carol Schoneberg, who runs a hospice volunteer program in Saco furthers the notion that death is a subject people avoid. “Death and dying,” she says, “are things that culturally people don’t want to talk about. They don’t want to face that it’s going to happen to them and everyone they love.”

Terry Cronin, who runs a similar volunteer program out of Portland agrees. “Even for folks that know they are moving towards their death, we are in a culture that doesn’t like to think about that,” he says.

Robert Gore Sr. is a case in point. Gore, who lives in the assisted living facility at Huntington Common, a retirement community in Kennebunk, suffers from a cancerous tumor in his throat. Together with his physician, he has decided to forgo chemotherapy. “Because of all the side effects,” he says, “I decided it’s not worthwhile.”

Gore says he is unsure how this decision will affect the length of his life. “I don’t know how long my life is going to be,” he says. “I don’t seem to be progressing in my disease.”

Though refusing chemotherapy may or may not shorten his life, Gore is an older man with cancer. Yet he says he has not talked about the possibility of death with his family, his doctor, or his friends. He says he will talk to someone about death if they bring it up, “but I let them know that it’s not something I want to talk about . . . It’s a very personal thing.”

Neither has Gore considered eventual hospice care. In fact, he says, “I’ve heard of it, but I don’t know exactly what it is.”

Though our culture does not encourage a conversation about death, recent political developments in the state have forced Mainers to think about the issue. First there was Question 1, defeated at the polls in November of last year.

More recently, in January of 2001, Medicaid began offering hospice coverage. The media coverage surrounding these two events is indicative of our society’s attitude to death. While we as a society are happy to discuss the theological questions surrounding Question 1, we’d rather not think about a change in policy that will affect the way a large number of people in our state actually die.

The debate over the right to commit suicide was vigorous — newspapers editorialized, Maine NPR ran coverage, regular people debated the issue — but the outcome of the referendum spoke far more to philosophical questions than practical concerns. While the question of whether we as a society allow our members to take their own lives partially defines our beliefs about freedom and the sanctity of life, the actual number of people who would opt to use this right would be minimal. In two years of practice in Oregon, only 43 people took advantage of legal physician-assisted suicide. By contrast, the Department of Human Services’ decision to allow Medicaid to cover hospice in Maine perhaps won’t sell as many papers, but it does have tremendous import in the lives of Mainers on Medicaid. However, this change in coverage received almost no fanfare in the press.

From a legislative perspective, at least, the End-of-Life Care Bill broke the silence surrounding issues of death and dying, and you could almost hear the sighs of relief. Normal house rules had to be suspended to allow the 68 representatives who wanted to co-sponsor the measure to get on board. Madore says he was “amazed at the number of people who have written me on all sides of the political spectrum saying ‘God, it’s about time.’ Dying is not partisan. It strikes a chord with everyone. This brings out a discussion that people aren’t having, but they should.”

When Medicaid in Maine began to pay for hospice this January, advocates saw the move as a step forward in offering care to the state’s poor. The problem with Medicaid coverage, however, is that it is based on Medicare coverage and Medicare pays a set hospice rate — around $100 a day — that doesn’t cover the average patient’s expenses. This is especially true if the patient receives chemotherapy or the AIDS drugs known as protease inhibitors.

According to Laurel Coleman, a geriatrician — a doctor who works with the elderly — and Joe Mayo’s doctor, Medicare (and hence Medicaid) has not kept pace with the skyrocketing cost of drugs. Coleman claims that in the ’80s, when Medicare began paying for hospice, 15 to 20 percent of a patient’s costs were for medication; nowadays the figure is between 50 and 60 percent.

The result of this lack of funding is that hospice programs must scrape to get by and cannot offer the range of services they could if they were better funded. For instance, Powell offers the example of a hospice patient who for a short time is upgraded to 24 hour care (normally hospice care is not full time). In Maine, says Powell, understaffed hospice care providers often cannot provide this kind of care even when it is deemed necessary.

To remedy these cost issues, the End-of-Life Care Bill seeks to increase the amount Maine Medicaid will pay from around $100 to $130 per day.

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