||Thanks for your answers, especially the references. That's great!!|
When you said,
"10) Change the way you talk about these issues. When the decision is made to stop a life sustaining treatment don't say "We are withdrawing care now." or "There is nothing more to be done"...Let them know what they can count one, what you will do, that you won't abandon them."
I was very interested. My mother has recently had a severe heart attack, and after extensive tests, the doctors told her "There's no intervention that we can do, so we're sending you home." Privately I was told, and apparently my mother was not, that she has a 99% chance of a fatal heart attack in the next few months. I was struck by the obvious concern of the cardiologist, but also by his being very very uncomfortable about approaching the topic of death with his patient.
I think that the staff at the hospital where Mom was treated would REALLY benefit from the suggestions you noted, especially training in being able to talk about the issue. This can't be, I don't think, an isolated issue, or just one related to only one hospital.
Are there any plans for a JCAHO-produced lecture series or anything like that on the topic? Just wondering.
MTSU's Psychology Department has several courses that deal with aging and death/dying. Dr. Janet Belsky's books are very good on the topic of aging issues and end-of-life issues, and she teaches at MTSU.
by Ingolfsson on March 6, 2000 11:11
Anne Marie, your experience with your mom is not too unusual. I'm going to answer your personal question here as its such an excellent example. What ideally should happen is a conversation with her about what she knows, what she doesnít know, AND if she wants to know anything at all. Not everyone wants to know everything. But given the statistic about a possible fatal heart attack you were told, she needs to be given the opportunity to plan, get things in order. Advance care planning is more than just making out a living will. It includes looking at any goals your mom might have, things left undone, people to talk to. Maybe writing letters to young children or yet to be born grandchildren. Maybe she would like to create a memory book with the family or as a gift to them. Maybe she would like to go to Vegas and bet a lot of money at the black jack table. The goal is try to help her do what she would want to do with the time left, to do what has meaning for her. Its a time for courage on your part and other family to ask tough questions and share things you always wanted to. So many people say after the loss of a loved one "I wish I would have saidÖ". You know her time may be shorter, this is an opportunity you all should take advantage of.|
Additionally, medically speaking, what can be done to minimize uncomfortable symptoms and maximize function? For a person like her she must also decide if she would want to be resuscitated. Many states, Tennessee included, allow a person not to be when they are out of the hospital if that is their wish. If that isn't her wish a serious and compassionate conversation about the extent of life sustaining treatment she would want based on her condition needs to happen. To have this conversation the patient, your mom, really needs medical information from her physician about what she can expect as do you and the other family. I often find the family and patient have to give the physician "permission" to tell the hard news. The old school says don't tell the patient the bad news they loose hope. I believe, and my experience is primarily that truth well delivered gives the possibility of new hope for good end of life planning and doing those other things mentioned above. Patients with life-threatening illness loose hope from being abandoned, having uncontrolled pain and other symptoms, and loosing control of making decisions or not really being a person.
Many of the various studies about end of life care bear this out. One of my favorites is from Supportive Care of the Dying: A Coalition for Compassionate Care (SCD:CCC) Their executive summary entittled "Living and Healing During Life-Threatening Illness" from June 1997 is one of the first focus group style studies to talk with dying people and their families and care givers about what is needed. Much of their work is available on the Catholic Health Association website. SCD:CCC is a coalition of the major Catholic providers. They have a most marvelous video on the report and a wonderful newsletter called Supportive Voice that showcases improvements and projects all around the country. They can be reached at: Supportive Care of the Dying c/o Providence Health System 4805 NE Glisan Street, 2E07 Portland, OR 97213
Another good reference on what quality end of life care should be, from the patient's perspective, is by Singer, Martin and Kelner, in JAMA, January 13, 1999;Vol 281, #2 pp 163-168. 5 domains were identified including: receiving adequate pain and symptom management, avoiding inappropriate prolongation of dying, achieving a sense of control, relieving burden, and strengthening relationships with loved ones. Any one of these areas could be a focus of efforts.
There is a new report developed in conjunction with JCAHO and adopted by 13 specialty medical societies, that lists core principles for end of life care. (Principles for Care of Patients at the End-of-Life: An Emerging Consensus among the Specialties of Medicine, published by the MilBank Memorial Fund) Any of these could be ideas on which to build programs, practice standards, quality improvement projects. A way to see how your organization measures up.
The 11 core principles are:
1) respecting the dignity of both patient and caregivers
2) being sensitive to and respectful of the patient's and family's wishes
3) using the most appropriate measures that are consistent with patient choices
4) encompassing alleviation of pain and other physical symptoms
5) assessing and managing psychological, social, and spiritual/religious problems
6) offering continuity--the patient should continue to be cared for, if so desired, by his or her primary care and specialist providers
7) providing access to any therapy that may realistically be expected to improve the patient's quality of life, including alternative or nontraditional treatments
8) providing access to palliative care and hospice care
9) respecting the right to refuse treatment
10) respecting the physician's professional responsibility to discontinue some treatments when appropriate, with consideration for both patient and family preferences
11) promoting clinical evidence-based research on providing care at the end of life.
by Kate Payne on March 10, 2000 01:36