LOS ANGELES--Do you ever wonder, if you were to become terminally ill, would your doctors be able to provide you with the kind of care you would want in the last days of your life?
It may be an uncomfortable topic to talk about, but it’s one that health care providers are encouraging families to discuss, even before the need for such services should arise.
Among those who are committed to helping people better understand their options is Rose Lanam. She’s a native of Jamaica who has provided health care services in Los Angeles for more than 30 years. This London trained nurse owns “Angeles Vista Hospice.”
Lanam is among a growing group of health care providers working to get the word out to the minority community that palliative care is a benefit they should not be afraid to explore if faced with a serious health crisis.
According to a poll conducted by the California Health Care Foundation, 60% of respondents say that making sure their family is not burdened by tough decisions about their care is extremely important.
The state-wide poll shows most Californians have not communicated their end-of-life wishes to the loved ones they would want making decisions on their behalf.
While a large majority of those polled (82%) say it’s important to have end-of-life wishes in writing, only 23% say they have done so.
Types of Care
Hospice and palliative care are both health care services, but hospice offers a more limited form of end-of-life treatment only in one’s final months.
Palliative care is provided by a team of doctors, nurses, and other specialists, who work together with patient’s other doctors to provide an extra hand of support. It is focused on providing patients with the relief from symptoms, pain, and stress of serious illness—whatever the diagnosis. Palliative care can include curative treatment as needed at any age and any stage in a serious illness.
Hospice provides a subset of special care to improve quality of life for patients whose illness has progressed to a point where curative treatment is no longer desired or beneficial. In hospice, the focus is on caring, not curing—and in most cases, care is served at the person’s home.
Hospice care is covered under Medicare, Medicaid (called Medi-Cal in California), most private insurance plans, HMOs, and other managed care organizations. For a patient to be eligible, two physicians must certify the person’s life expectancy is six months or less.
Palliative Care Teamwork
The Supportive Care Medicine [www.cedar-sinai.edu/supportivecare] (SCM) program at Cedars Sinai Medical Center in Los Angeles one of the growing number of hospital programs around the United States designed to offer a team approach rather than the standard medial-tech method of treatment.
The program is leading the effort to empower the Caribbean community in Southern California with knowledge about options for end of life health care, with it’s patient-centered focus on treasuring each day and planning from the heart.
SCM includes direct patient care; clinician education and research to empower nonpalliative care providers to effectively incorporate “primary palliative care” skills to their everyday practice; and community outreach and engagement, which emphasizes patients’ right to speak with their primary providers about advance directives and end-of-life issues.
The program also helps people to communicate their end-of-life wishes. As age catches up, many end up avoiding the issue until it’s too late. That often leaves their families in financial burdens and disoriented about what decisions to make.
In order to have the proper care or treatment while terminally ill, people should prepare a care plan that includes an advance health care directive and “POLST” form, as well as designating a trusted friend or family member as your health care agent to represent what you want for your end-of-life wishes, if you are unable to speak for yourself. (This is also called a “durable power of attorney for health care.”)
A POLST, or Physician’s Orders for Life-Sustaining Treatment is a brief legally binding document signed by your doctor, which gives a patient more control over his or her end-of-life care.
Key to Living Longer
According to the Coalition for Coalition for Compassionate Care of California (CCC California), research has found that those with advanced directives have often received less aggressive medical treatment when death is near, are more likely to be admitted to hospice care, and more apt to died at home instead of in a facility.
In addition, for certain well-defined terminally ill populations, patients who chose hospice care lived an average of 29 days longer than similar patients who did not choose hospice.
Yet, CCC California examined the intensity of care people actually receive life’s end, and found that the number of patients staying in intensive care units for longer than a week have been increasing.
Studies show that in 1996, 12.5 percent of Medicare recipients in California spent at least a week in intensive care in their last six months of life. By 2007, that had risen to 20.3 percent. Almost a third of Californians saw 10 or more physicians in the last six months of their lives.
Nearly one in three Medicare recipients had surgery during their last year--and one in five were wheeled into an operating room in their last month. And half of those patients had surgery in the last week of life. Patients with chronic illness in their last two years of life, account for one-third of total Medicare spending.
CCC California Vice-Chair Karl Steinberg, MD, and chief medical officer, and Shea Family Health, stressed that despite some religious worries ethnic elder may express, faith leaders are very supportive of end-of-life care. He said it’s important to let your loved ones go through the process at end of the life. When people are terminally ill, it is typical that they will request to see their pastor, priest, or other faith leader of choice.
When you and your loved ones are ready to discuss end of life care, there are many resources available to help you navigate the process.
Coalition for Compassionate Care of California website includes advice and sample forms.
National Hospice and Palliative Care Organization includes national and state-level information.
California Health Care Foundation palliative care website includes up-to-date information about end-of-life care in the state.
Lyndon Johnson wrote this article for CribPress News with support from a New America Media fellowship, funded by the California Health Care Foundation. [http://bit.ly/1wNd22j] Nakeesha Richards provided additional research and writing.
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