Consumers will sound the need for access
Shared stories may hold key to raising awareness
For all what industry experts and pundits say is wrong with end-of-life care, their words pale when compared to those of people actually affected by poor care or denied access to end-of-life treatment or palliative care.
End-of-life care has been on the minds of many these days — including state and federal lawmakers, and the medical community. As the discussions continue on how to better care for the dying, the din from these forums is spilling over into the public consciousness. It is here that hospices, hospitals, health plans, pain specialists, physicians, nurses, and lawmakers can get a real sense of what needs to be done.
Make timely diagnoses
One of the most glaring obstacles to quality end-of life treatment is getting physicians to make timely terminal diagnoses rather than subject their patient to medical intervention without regard for providing a quality death.
The story that follows was adapted from the Web site of the Hospice Foundation of America, a hospice advocacy group in Miami. In it, the writer describes how the system worked for her in one instance and failed her in another:
A few years ago, I worked for a home health care agency affiliated with a large area hospital. I was picked to take a hospice training course, since we frequently went into the homes of local hospice patients to provide a few hours of free time for the primary caregivers. This was my first experience with hospice.
At the time, I thought it was a wonderful program. About a year later, my father-in-law was diagnosed with terminal cancer. When George’s doctor suggested hospice, they called Hospice of Stark County. At the time, I thought it was so great. Hospice [workers] made sure that the end of George’s life was as comfortable as possible for him, and the entire rest of the family. When George died, the nurse and counselors were at the house in minutes. Even the grandchildren were given the chance to talk to the counselors.
Now my mother is terminally ill. She has end-stage cancer, emphysema, and congestive heart failure. We asked the oncologist more than a year ago if he supported hospice principles, and if he would be willing to [refer to hospice] when the time came. "Absolutely," he answered. He treated mom’s cancer for over a year. I can’t tell you how many times I would ask him or a member of his staff why Mom was so angry, so confused, so demanding. The answer was always, "We’re not going to deal with that here, today." Hospice never told George that and offered help for him and his caregivers.
The first week of June 1999, he gave Mom chemotherapy in his office. The next week, she was in the hospital with her lungs filled with fluid. The oncologist walked in and told her, "I can’t do anything else for the cancer, from now on, this other doctor [a pulmonologist] is going to take care of you." Goodbye. That was it.
Tonight she is in a nursing home, she’s in too bad a condition for me to take care of her at home. She has to take physical and occupational therapy every day, so that Medicare will pay for the nursing home. When I ask a question about her condition, they seldom have any answers for me. She is depressed, she feels abandoned and very, very angry. I feel ashamed because I can’t take care of her. I have a good cry every day, and go for days without eating or sleeping. Nobody is dealing with her emotions, let alone helping me with mine.
Between the change of doctors, the move to the nursing home, Hospice has still not been called in. Dealing with the death of someone you love is always difficult. If you have been fortunate enough to go through it with the Hospice program, trying to make it through without hospice is maddening. I know the level of care that my mother could be getting. It’s all the difference in the world. If you have the choice, call them, you will be amazed at the amount of care that your entire family will get.
Though a disturbing story, it’s is not an unusual one, according to hospice experts. That dynamic one and those similar to it have contributed to the crippling phenomenon of declining length of stays — physicians unwilling to accept that medical intervention will have no impact on a patient’s terminal illness. By the time the physician and family accept the inevitable, it’s too late for the patient to enjoy the full benefits that hospice offers.
While this has a severe financial impact on hospices, the impact on patients and their family can be devastating. What can hospices do to see that more patients enjoy the first scenario described above and not the latter?
Monetary impact can be devastating
The answer, says Jack Gordon, president of the Hospice Foundation of America, is in getting physicians and the public to recognize their limitations. While the advice seems lofty, Gordon believes there are practical ways to achieve this goal.
According to Gordon, hospices — both as a collective industry and on the local level — must work to affect public opinion.
The message that the public needs to hear is: Hospice is not synonymous with giving up.
"I would become a good friend of the local newspaper," is one piece of advice from Gordon. Aside from peppering health writers with press releases every month, hospices should turn to community groups that can help promote the hospice message. Gordon, a former North Carolina state senator, likened the public awareness challenge facing hospices to a political campaign. "Reach out to those who have sympathy for your cause," he says.
What hospice isn’t
By this, Gordon is referring to marshalling the support of community groups who can help educate the public. One example, he says, is to set up a meeting with area clergy to explain the hospice philosophy in hopes that their unique position within the community will lead to referrals.
While public awareness can lead to a better understanding of hospice, getting physicians, hospitals, and insurers to embrace hospice will ultimately boost referrals and contribute greatly to improving end-of-life care. Just as public awareness efforts focus on getting people to understand their mortality, efforts aimed at physicians should focus on their limitations as healers.
"When physicians talk about curing a patient, it’s a fallacy," Gordon says. Death is inevitable."
While doctors exist to help postpone the inevitable, they need to be taught when their efforts impede with a patient’s right to a quality death. Gordon advises hospices to work with hospital ethics committees to review potentially terminal cases. While ethics committee reviews are nothing new, Gordon says case reviews should be done while the patient is being cared for, rather than reviewing cases after the fact. This would allow the committee to question physicians’ care plans and ask if the physician has considered whether curative efforts are in vain. In addition, it will get physicians thinking about end-of-life care sooner, rather than when it is too late.
"Instead of hospice being an afterthought, it will be a forethought," Gordon says.
Gordon acknowledges that increasing access to hospice is a far more complicated matter than simply better public and physician relations. In an attempt to gain a grasp on not only hospice access, but access to all types of end-of-life services, the Robert Wood Johnson Foundation (RWJF) is using its Community-State Partnership to Improve End-of-Life Care, a three-year program with the goal of improving care of the dying.
The program is a new $11.25 million grant program funded by RWJF with direction and technical assistance provided by Midwest Bioethics Center (MBC) in Kansas City. The goal of the program is to encourage state and community groups to work together improve end-of-life care. Myra Christopher, president and CEO of MBC and national program director of the Community-State Partnerships program, says the intent of the program is to award grants to organizations working to bring about statewide policy change and stimulate community dialogue.
Ask for palliative care
Part of the state grantees initiatives include public forums where family of the recently deceased share their end-of-life experience — good and bad. While most grantees are still in the process of collecting stories, there is a feeling that the stories will resemble the one above.
"We need to emphasize that dying is not a single act, said Lawrence Weiss, PhD, director of the Sanford Center for Aging at the University of Nevada-Reno, an RWJF grantee. "Primarily, we want to change public perception and increase education."
Weiss agrees with Gordon that changing both public and professional perceptions of end-of-life care will boost access to hospices and other types of services for the dying.
However, RWJF grantees are going about it a little differently. Grantees are gathering the stories, not only to pinpoint areas of needed improvement, but also use them to raise the awareness of physicians and other providers who play a role in referring patients to hospice.
"Indirectly, it will address [physician attitudes]," Weiss says. "Hopefully, they will see the necessity to refer early. If consumers ask for [palliative care] enough, physician attitudes will change."
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