Discussions on end-of-life issues improve quality of life, save $$$
Discussions on end-of-life issues improve quality of life, save $$$
Give families permission to ask questions, expect answers
Talking honestly with patients and their caregivers about end-of-life issues enhances the quality of life during a patient's last days and also reduces health care costs, according to a recent study on costs at the end of life.1
"We refer to the end-of-life discussion as the multimillion-dollar conversation because it results in a shift away from expensive, noncurative care in a hospital to less costly, comfort care provided at home or in a hospice," says Holly Prigerson, PhD, senior auditor of the study and director of the Center for Psycho-Oncology and Palliative Care Research at Dana Farber Cancer Institute in Boston and associate professor of psychiatry at Harvard Medical School in Boston. Researchers also noticed no difference in outcomes and no survival differences between patients who received aggressive curative treatment at the end of life compared to patients who received palliative care, she adds.
The study shows that patients who spoke with physicians about end-of-life care incurred $1,876 in medical costs in their final week of life, compared to $2,917 for patients who did not talk with the physicians about end-of-life care.
The difference, in addition to lower costs, between patients who had an end-of-life discussion with their physicians and those who did not, was a reported better quality of life during their last weeks of life for the patients who had the discussion, says Prigerson. They were more likely to be referred to hospice and had less physical distress than patients who were undergoing mechanical ventilator use or admission to an intensive care unit, she says.
"Caregivers were also better prepared to handle bereavement when end-of-life discussions occurred," Prigerson adds. "Caregivers showed a higher acceptance of the patient's death and lower rate of disbelief because they were prepared."
Even with research that demonstrates the value of end-of-life conversations, Prigerson admits that it is a difficult conversation for any doctor or nurse to initiate. "A physician wants to cure someone, so an end-of-life discussion with a patient represents failure," explains Prigerson.
As medical director of Forbes Hospice in Pittsburgh, Randy S. Hebert, MD, MPH, often heard family members say, "I wish I had known what it was going to be like at the end," or "Why didn't anyone tell us about options?" "If people don't know how to prepare for their family members' death, they are two times as likely to be depressed for up to a year after the death2," he points out.
Family members are reluctant to initiate end-of-life discussions for several reasons, says Hebert. Forgetting to ask questions or being embarrassed about asking questions are common reasons for avoiding honest discussions about a family member's condition. However, for some people, there is an irrational fear that if you ask about a worst-case scenario, it will happen, he says. "Family members will also avoid asking questions because the physician never brings up the issues related to end-of-life," Hebert says. "They believe that if the physician doesn't think it's important, then the topic is off limits."
End-of-life discussions are even difficult for home health nurses, for the similar reasons that physicians find the conversations difficult, says Jeanne Dennis, PhD, director of Visiting Nurse Service of New York Hospice Services (VNSNY) in New York City.
"Several years ago, we realized that a lot of our home health patients were at the end of their life and would benefit from hospice care, but home health nurses were not identifying the patients as potential referrals to hospice," Dennis says. "We discovered a number of misconceptions about hospice, as well as other barriers to referral, including not knowing how to bring up the topic, and developed a program to provide a resource nurse for home health nurses." By offering a nurse who could consult with the home health nurse and accompany the home health nurse for the discussion of hospice, the VNSNY hospice saw an increase in the number of home health patients referred to hospice at an earlier point in their care, she says.
Another reason that family members don't bring up end-of-life issues with a physician, nurse, or other clinician is that they often are overwhelmed, points out Hebert. "They are dealing with the symptoms of Alzheimer's or another disease 24 hours a day, seven days a week," he says. Because their focus is on providing care for the patient's needs at that moment, they might not notice changes in behavior or condition, because they don't have the perspective they need to recognize a deterioration in the patient's condition, Hebert explains.
Physicians and other health care providers can prompt questions from family members with a tool designed to initiate questions about end-of-life care, says Hebert. He led a study in which a question prompt sheet was evaluated by family members to determine how effective it would be to initiating conversations with physicians or other health care providers. The tool has a list of questions ranging from "what are the risks of the treatment my loved one is receiving" to "how long can I expect my loved one to live?"
"Every patient at Forbes Hospice receives the question prompt sheet in their admission packet to encourage them and their family members to ask questions that they may not have asked before admission to hospice," says Hebert.
The real value of a question prompt sheet, however, is for patients who have not yet been referred to hospice. "Physicians outside hospice who have used the tool have liked it," he says. "I've been told that even though the conversations were difficult and the news for the family was the worst that could be given, the physicians were thanked for talking honestly with them."
References
1. Zhan B, Wright AA, Huskamp HA, et al. Health care costs in the last week of life. Arch Intern Med 2009; 169:480-488.
2. Barry LC, Kasl SV, Prigerson HG. Psychiatric disorders among bereaved persons: The role of perceived circumstances of death and preparedness for death. Am J Geriatr Psychiatry 2002; 10:447-457.
Need More Information?
For more information about end-of-life discussions, contact:
Jeanne Dennis, Hospice Director, Visiting Nurse Service of New York, 1250 Broadway, Seventh Floor, New York, NY 10001. Telephone: (212) 609-1911. E-mail: [email protected].
Cathy Follmer, RN, BSN, CHCE, CRNI, Corporate Director, Continuum of Care Services, Catholic Health Partners, 615 Elsinore Place, Cincinnati, OH 45202. Telephone (513) 236-5200. E-mail: [email protected].
Randy Hebert, MD, MPH, Medical Director, Forbes Hospice, 115 S. Neville St., Pittsburgh, PA 15213. Telephone: (412) 325-7200, ext. 7249. E-mail: [email protected].
Holly Prigerson, PhD, Director, Center for Psycho-Oncology & Palliative Care Research, Dana-Farber Cancer Institute, 44 Binney St., Smith 268, Boston MA 02115. Telephone: (617) 632-2369. Fax: (617) 632-3161. E-mail: [email protected].
For a copy of the Question Prompt Sheet to promote end-of-life discussions between patients, family members, and health care providers, see "Pilot testing of a question prompt sheet to encourage family caregivers of cancer patients and physicians to discuss end-of-life issues," in the March 2009 issue of the American Journal of Hospice and Palliative Medicine, pp. 24-32. To view the article online, go to ajh.sagepub.com/content/vol26/issue1. Access to the full article is $30 if you are not a subscriber to the online journal service.
Talking honestly with patients and their caregivers about end-of-life issues enhances the quality of life during a patient's last days and also reduces health care costs, according to a recent study on costs at the end of life.Subscribe Now for Access
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