Caring for Those
With Terminal Illness

End-of-life Discussions and Planning

By Susanna Donato
Susanna Donato is a writer for Physicians Practice

During the last several years, end-of-life care has gained a lot of attention as a medical issue. Since 1995, numerous groups, including the Robert Wood Johnson Foundation, the Soros Foundation and several others, have invested about $300 million to create awareness about end-of-life issues.

An unhappy public
Research has told us one thing consistently: patients aren’t satisfied with how medical professionals care for them and their family members at the end of their lives.

A 2002 study, commissioned by the Last Acts Campaign to Improve Care and Caring Near the End of Life, found that 93 percent of respondents believed it is important to improve how our system cares for dying people. The study found that just over half of the respondents believed the health care system does at least a good job at ensuring patients are as comfortable and pain-free as possible at the end of life. Nearly half believed the system does only a fair or poor job of providing emotional support to the dying and their families.

These results demonstrate that more people think less of end-of-life care than physicians might realize. More Americans — as many as 80 percent of us — live past age 65. As the parents of baby boomers complete their life cycles and the first generations of boomers themselves approach its frontier, end-of-life care is bound to become a bigger concern.

Defining end-of-life care
Most organizations define end-of-life care as all care for patients with advanced illness provided during the last six to 18 months of life.

“End-of-life care is a mainstream medical issue,” said Dan Tobin, M.D., a physician who focuses on health care consulting, with a specialty in end-of-life issues, through his Center for Advanced Illness Coordinated Care and newly formed Advanced Illness Practitioner Management. “Basically 2.5 million people die in a year in America, and 80 percent of those could have some sort of structured guidance — pain, symptom management and structured conversations geared toward their transition through advanced illness and the end of life.”

Tobin, based in Albany, N.Y., echoed the findings of a 1997 Institute of Medicine study, “Approaching Death: Improving Care at the End of Life,” that reviewed approaches to end-of-life care and laid out recommendations for improving that care. That report’s study committee defined a “good or decent death” as one that is free from avoidable distress and suffering for patients, families and caregivers in general accord with patients’ and families’ wishes and reasonably consistent with clinical, cultural and ethical standards.

In Tobin’s view, patients can undergo three circles of end-of-life care, moving backward from a patient’s death: hospice care, hospital palliative care teams and advanced illness services at home.

“The problem with hospice care is that physicians tend not to refer patients to hospice until their final two weeks — that’s the average duration,” said Thomas James III, M.D., a former hospice physician and now chief medical officer for Humana Kentucky. James is now working with a community-wide initiative in Louisville, Ky., to improve end-of-life care. “Medicare’s hospice benefit covers six months of care, but patients tend to assume that entering hospice means you turn the switch, and the lights go out six months later.”

Taking care forward
David Weissman, M.D., a professor of hematology/oncology at the Medical College of Wisconsin and editor-in-chief of the Journal of Palliative Care, considers end-of-life care and palliative care to be virtually synonymous. He recommends that physicians provide a palliative care consultation for patients and families facing a terminal illness. In this consultation, patients should discuss:

• assessing and managing physical symptoms,
• identifying personal goals for end-of-life care,
• assessing and managing psychological and spiritual needs,
• defining a support system and
• the estimated prognosis and discharge planning issues.

In Louisville, James said, the goal is to let patients be active in treatment for their advanced illness, while still having the option of hospice care.

“We’re trying to get people thinking in terms of all their options, earlier,” said James. “Then it doesn’t become a death sentence; it becomes a look at all options, which may include surgery, chemotherapy, radiation therapy, home care using a ventilator and hospice care — anywhere along the spectrum. People can approach it saying, ‘Let me see what my potentials are.’”

The Louisville program will provide patients with a series of counselors — nurses, social workers and other professionals from a variety of health-related disciplines — who are able to work with a patient with an advanced illness and his or her family to develop ways to cope with advanced illness. Topics will include how patients can consider treatment options, hospice options and choosing to refrain from any action. Counselors will get to know patients on a long-term, one-on-one basis, James said.

“We’re using the model developed by the Center for Advanced Illness Coordinated Care [Tobin’s group], but tailoring their practice to our own community,” James said.

“We’re hopeful that a pre-hospice program will have such a humanitarian benefit, and frankly a bottom-line benefit, that it will become adopted as a real benefit [covered by health plans]. It’s a way of trying to demonstrate a process that will improve human patient care and be incorporated into benefit structures.”

Options for practices
“I’m convinced that … physicians can put something into their office practice, in a short amount of time, that can deliver and measure outcomes, and there will be a noticeable difference,” Tobin said. “It is better for physician practices; it improves the quality of life for patients and caregivers, and it avoids unnecessary costs for insurers.”

Tobin suggested that physicians train staff in supportive medicine for end-of-life care, and make sure they, themselves, are current. Numerous programs offer continuing medical education programs centered on the end of life. Additionally, several Web sites offer continually updated information on all aspects of end-of-life care (see Additional Sources).

“Introducing conversations around advanced illness is the key to the work we’ve done, which is not hospice or palliative care,” said Tobin. “Instead, it’s, ‘How are you doing? What are your worries, concerns and fears that you and your family have to deal with?’ And then you follow that person into a later time.”

To begin the next step of this process, Tobin’s group is developing a training and employment program for what he has termed “advanced illness practitioners.” These nurse practitioners, Tobin explained, are specially trained in pain and symptom management. They also are adept at guiding patients and families through a series of structured conversations about the end-of-life process.

“Trained professionals can help with these conversations,” Tobin said, “because it’s emotionally charged and culturally taboo [to discuss death]. Most people don’t know how to deal with it.”

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