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Have you thought about what you want your care to be like at the end of your life?
The above video is part of the National Healthcare Decisions Day campaign to encourage people to have that tough conversation.
Here in Massachusetts, it's more than encouragement — it's almost law. A new amendment — the "Palliative Care Awareness" amendment in the Senate bill on improving the quality of health care and reducing costs -- would require doctors have that conversation with their terminally ill patients.
Here's an excerpt from the amendment:
If a patient is diagnosed with a terminal illness or condition, the patient’s attending health care practitioner shall offer to provide the patient with information and counseling regarding palliative care and end-of-life options appropriate to the patient, including, but not limited to: (i) the range of options appropriate to the patient; (ii) the prognosis, risks and benefits of the various options; and (iii) the patient’s legal rights to comprehensive pain and symptom management at the end of life. The information and counseling may be provided orally or in writing.
Deobrah Dolaway of the Hospice and Palliative Care Federation of Massachusetts, the organization named in the amendment as the one with whom the Department of Public Health will consult to develop "educational documents, rules and regulations," joins Radio Boston to talk about how this may all unfold.
Jane deLima Thomas of the Harvard Palliative Medicine Fellowship also joins us to share the clinical perspective. With all the terms in end of life planning, Thomas broke down three of the big ones:
Hospice encompasses a specific collection of services that is provided to patients who are terminally ill and who have a limited time prognosis
Palliative care is a much broader field and approach. It can be given to any patient who has a serious or life threatening illness regardless of prognosis — they can still be hoping for a cure. With palliative care, there is added focus, expertise and support to ensure that patients' pain symptoms are controlled, the families are supported and patients' end of life care plans match their priorities.
Advance care planning is part of both palliative care and hospice. It refers to conversations patients have with their doctors, family members and health care proxies about what their health care priorities are. The key to advance care planning is to have the conversation early because patients may become very ill and would no longer able to make their wishes known.
- Deborah Dolaway, Vice President of the Board of Directors and Chair of the Public Policy Committee for the Hospice and Palliative Care Federation of Massachusetts. She is also the Administrator of Cranberry Hospice & Palliative Care, a hospital-based hospice in Plymouth, Mass.
- Jane deLima Thomas, associate director of the Harvard Palliative Medicine Fellowship, clinical instructor at Harvard Medical School, and palliative care physician at Dana Farber and Brigham and Women's.
Advance Care Planning Forms:
From Meghna's Reading List:
Mass. Senate Skirts End-Of-Life Counseling Controversy - "With no debate, and a quick call of the ayes and nays, the Massachusetts Senate approved a requirement last week that all doctors and nurses talk to dying patients about their end-of-life options. In passing the amendment, legislators avoided a minefield that exploded repeatedly during the national health care debate..."
"Letting Go" by Atul Gawande — "Sara Thomas Monopoli was pregnant with her first child when her doctors learned that she was going to die. It started with a cough and a pain in her back. Then a chest X-ray showed that her left lung had collapsed, and her chest was filled with fluid. A sample of the fluid was drawn off with a long needle and sent for testing. Instead of an infection, as everyone had expected, it was lung cancer, and it had already spread to the lining of her chest. Her pregnancy was thirty-nine weeks along, and the obstetrician who had ordered the test broke the news to her as she sat with her husband and her parents. The obstetrician didn’t get into the prognosis—she would bring in an oncologist for that—but Sara was stunned. Her mother, who had lost her best friend to lung cancer, began crying..."
"Patient Centered Care and Human Mortality" by the Massachusetts Expert Panel on End of Life Care — "Despite extraordinary advances in medical care, each of us - and everyone we love - remains mortal. While in our richly pluralistic Commonwealth we have widely diverse views about how best to confront and respond to the possibility of approaching death, the Massachusetts Expert Panel on End-of-Life Care found unity about the importance of respecting the personal values, goals, and treatment preferences of individual patients and their families..."
This segment aired on May 23, 2012.
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