Tomorrow morning, WBUR begins a five part series on end of life care. You can hear the stories at 6.40am and 8.40am…and all the sections together in a one hour documentary on Sunday 3 May at 8pm and Thursday 7 May at 9pm.
We’ll post the links to the audio and special web features here.
Please let us know what you think.
Here’s a summary of the project:
In this new documentary about end of life care in America special correspondent Rachel Gotbaum investigates what prevents many patients from having a dignified death. From well-intentioned but maybe unwarranted medical interventions, to the pressure from family members, to the difficult decisions doctors – who are trained to extend survival – have to make when treating elderly patients, this program delves into the challenges in America to proper end of life planning and a “respectful death.”
• National surveys show a majority of Americans would prefer to die at home, but 80% of us die in hospitals or other institutions.
• One third of all Medicare spending, or 144 billion dollars, is spent on patients at the end of life.
• Fewer than half the hospitals in the US offer palliative care, a type of care that helps patients decide on end of life treatment.
In this documentary Gotbaum follows several patients in their last months as they confront some of the most difficult decisions of their lives – whether they should pursue aggressive and sometimes painful medical treatments that may extend survival or rather focus on how to maintain the best quality of life in their final months. She reports on how trends in the American healthcare system influence their decisions and she talks to family members who are often the ones pushing for as much intervention as possible. This is a documentary on a topic that people are often reluctant to hear about, let alone discuss; but this program provides information and insight into an issue that all of us will eventually face.
The type of care we receive at the end of life is of profound importance to us all at a time when the lines between technology and humanity are getting blurred.
Apart from the human stories that are central to this program, the financial aspects are also of critical importance. The amount of money spent on end of life care in the US is being carefully analyzed in healthcare circles as a new administration confronts the spiraling costs of the modern healthcare system in a country with an aging population.
How can the healthcare budget match a medical culture in which death is considered failure?
The story on the air this morning said to visit the web site for a summary of how each of the 50 states fares on this issue. I can’t find that information on your site this evening.
Hi Dave – sorry this is difficult to find. We’ll try to place the link more prominently.
In the meantime, try this:
http://www.insideout.org/documentaries/qualityofdeath/
And click on “HOW DOES YOUR STATE RATE?”
Best, Martha Bebinger
I hope you will cover the use of Music Thanatology as pioneered in Mazzoula Montanaat. St.Patrick’s hospital which uses the voice and harp to ease he transition out of lie. Also one of the early advocates of palliative care ` Dr. Ira Byock originally in Montana who is noe In Hanover N.H.,
What ever happened to the “End of Life Commission” that the Commonwealth started? The website seems to “die” in 2005. (No pun intended.)
I am a nurse working in critical care. My co-nurses and I are finding in a lot of cases the “DNR” wishes of patients are not being honored by (mainly) MDs. Cases in point. 3 weeks ago I had an 84 yo patient who stated to her family she would never want to be resuscitated to the point of being on machines. She was a DNR/DNI. She came in with a toxic megacolon and required surgery. Family consented to intubation for surgery. She was critically ill post op but able to be extubated. Third day post op she was not waking up and not breathing well. The family was asked by the critical care MD if we could reintubate if “she got into trouble with her breathing.” Family stated ” we would have to think about it, she would never want it.” The patient developed increased respiratory distress and the family was called and asked by the MD if they wanted us to “help” their loved one breath. The patient had multiple co-morbidities and three weeks later she is jaundiced from head to toe, she is not awake, her DNR wishes were not honored and next week she will have a tracheostomy and feeding tube. The family cannot let go and the physician did not aid them in the process. She has little to no chance of having a quality of life ever again.
As a nurse I have intervened with other patients who have been in the viscious cycle of multiple admissions within weeks or months of each other. When they come in as a DNR, I acknowledge the DNR wishes of the patient and reinforce to the family that the patient already made the decisions and their hardest decision will be to honor the DNR. I reinforce that their loved one could be made comfortable. Physicians on the other hand ignore the DNR and push to treat for a “couple of days” with antibiotics, etc to see if it will help. For what? For the patient to come back and suffer through many procedures and indignities to prolong the inevitable? MDs need education and there should be a federal law that DNR orders need to be honored. This is happening more often than not and that is what is wrong with end of life care.
When a person is in a nursing home it should be a federal law for the patient to be spoken to about the option of CMO and a do not hospitalize order.
Having worked as a hospice medical director for the past decade and currently as a direct patient advocate (www.MDCanHelp.com,) the issues raised by Rachel Gotbaum’s wonderful series resonate loud and clear. All too often, doctors and patients engage in a dance of “don’t ask, don’t tell,” especially as the person gets sicker and treatment options become more limited. Although I do not have a cure for this problem, one major solution is for doctors to paint a realistic yet compassionate picture as early as possible. For a patient with metastatic cancer, the dialogue should not simply be “here are the things I can to do treat your cancer” or “we’re going to do everything we can to fight this.” Instead, the dialogue should be “there are things I can do to treat your cancer and I truly hope they will be effective. I owe to you, however, to be honest about your situation. Your cancer is advanced, and it is very possible that the treatment I am suggesting will not work. As your doctor, I want to be clear that whatever the outcome, I will always be here for you and your quality of life is my top priority.” This type of dialogue plants a seed of reality that can then be built upon if the patient does not respond to the treatment. It allows the patient to make key life decisions based on a truly realistic knowledge of what may lie ahead. It also keeps the patient from being shocked or plunged into depression if the cancer does not respond to treatment. In addition, it makes it clear to the patient that the doctor is committed to treating the patient with the respect and dignity every person is entitled to. Isn’t that what every patient deserves?
I work as a Hopice Case Manager and an Education specialist. One of the most important factors of end of life care is the fact that we do not educate the patient regarding their prognosis. As a medical society we want a curative treatment and not palliative treatment. Aat that point we would have to surrender, we missed one! We need to humble ourselves as medical professionals to ask the patient what they might want? Statistics show that when families select hospice at end of life patients and families can experience a better “Death”. Why do we continue to put our elders through tedious physical therapy, occupational therapy, and so on, so we can bill for skilled care through Medicare? Let these pt’s rest if they want too! Surrender! I know as a health care worker these stipulations will be in my advanced directives which is the most important document for our families and physicians.
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How can I listen or read a transcript of these programs?
I searched the title & it doesn’t come up
thanks
Jeff Zesiger MD
Palliative Care and Hospice
Hi Jeff – try this link:
http://www.insideout.org/documentaries/qualityofdeath/
Thanks, Martha Bebinger