Posted on: August 18, 2014
Written by: Coalition for Compassionate Care of California
This story originally appeared in the California State Retirees newsletter.
Our close ones know a lot about us: what foods we like and dislike, who we root for in sports and the first thing we’d do if we won the lottery.
But do they know whether we want CPR and other life-saving measures if we can no longer talk for ourselves?
At a recent CalPERS Health Benefits & Pension Committee hearing, Judy Citko, executive director of Coalition for Compassionate Care of California (CCCC), told the committee members several surprising facts about what people want and what they actually get at the end of their lives.
For example, 44 percent of Californians have discussed their end-of-life wishes, but only 23 percent of them have them in writing.
Citko said the coalition is teaching people how to make their desires known through community gatherings, CalPERS meetings, webinars and on their website – https://coalitionccc.org
The coalition, which is comprised of various statewide organizations and individuals, representing health care providers, assisted living facilities, nursing homes, hospices, consumers, state agencies and others. The group is dedicated to improving end-of-life care and the advancement of palliative care, which comes from the Latin word, “palliare,” which means “to cloak.” It is focused on providing seriously ill patients with relief from their symptoms, pain and stress – whatever the prognosis.
The care is provided by a team of doctors, nurses and other specialists and can be provided at any state of an illness and in both inpatient and outpatient settings. Hospice care is a form of palliative care, specifically designed for patients who are terminally ill.
“Although palliative care may have been around in some forms in the past, is it only recently that it has gained acceptance,” said Citko.” While the concept has been around since the mid-90s, the process of translating that concept into actual health care services is still largely in development.”
Citko said that most California hospitals have a palliative care service available to inpatient individuals. But few services are available for those needing palliative care outside of the inpatient setting.
“Once people know what palliative care is, they are extremely positive about it and want access,” Citko said. In a survey of Californians, she said 92 percent of respondents said that palliative care is important and should be made available.
Another priority for Citko and the CCCC is educating people about advance directives and Physician Orders for Life-Sustaining Treatment (POLST) forms.
Citko said everyone 18 and older should fill out an advance directive order, which lets your health care wishes known if you are unable to communicate. On the form, a person can appoint a surrogate decision maker who would have durable power of attorney for health care.
If you are diagnosed with a serious or chronic, progressive illness at any age, talk with your physician about completing a POLST form, which will let others know such things as whether you want them to administer CPR, give you a feeding tube or take additional measures to keep you alive.
“The goal is that your treatment wishes are honored,” said Citko.
A video about how to talk about end-of-life care is available in the coalition’s series of videos, which can be seen at http://youtube.com/coalitionccc