We’re not talking insurance plans, reproductive rights, exercise routines or nutrition.
We’re talking death — one of the most important decisions you’ll have to make for yourself, your parents, your grandparents, perhaps others.
Who do you want responsible for making decisions for you in case you’re ill?
What kind of care do you want to receive? Do you want aggressive treatments to prolong life or palliative care to provide comfort measures, increasing the quality of life in your final days?
What do you want to happen to your body after you pass away?
These are all tough questions, but they’re important ones.
It turns out that one out of every four Medicare dollars is spent on treatment during the last year of life. If we’re spending that much money, we should be investing an equal amount of time and thought into seriously talking about this time period with our loved ones.
National Healthcare Decisions Day encourages people to fill out an advance directive. This legal form outlines answers to many of the above questions, ensuring your end of life wishes are upheld once you’re unable to communicate them. (You might have heard of a living will — same idea.)
Marie Colantoni Pechet and her sons on Cape Cod, Summer 2011
By Marie Colantoni Pechet
Last week, I was honored to be invited to participate, as a patient, in a palliative care conference. Hosting Stage IV cancer in my body provided my ticket in.
Not long ago, I felt that palliative care was the personification of the grim reaper. I considered it to be the last conscious step on the way to death, where they focus more on your comfort than cure.
When I protested meeting a palliative care doctor, I was told, “Think of it as pain management.”
But I’m not in pain, I thought. I didn’t want my life to end, just this conversation.
Nonetheless, during a recent low point in my treatments, I agreed to meet with a palliative care doctor at Massachusetts General Hospital.
I told Dr. Eva Chittenden about my acupuncture and other “alternative” methods I used to help myself. I told her about my trip to Lourdes, France to pray, and the impact that had on me. Since I didn’t really want to see her, I didn’t care if she didn’t buy into all this. I had nothing to lose. Also, I feared that she would suggest more drugs for nausea or depression, which I most definitely did not want.
However, she listened incredibly well and got my point that taking more drugs wouldn’t be the answer for me. Surprisingly, she was quite helpful and I hoped to see her again.
A couple of weeks later, she invited me to participate in the palliative care conference. I went from kicking and screaming about connecting with palliative care to being a featured speaker at this conference, a shift I found to be amusing. Continue reading →
You’d never know it from all the national polemics about “death panels” and “pulling the plug on Grandma,” but in fact, there’s a whole lot of consensus around what ought to be done to help people die better.
That’s according to Dr. Lachlan Forrow, chairman of the “Massachusetts Expert Panel On End-Of-Life Care,” which laid out its plan today for how the state can begin to improve the end. Everybody the panel consulted, Dr. Forrow said, “agrees on what the health care system needs to do, and I mean everyone,” from those who think dying people get too much care to those who worry that dying people get too little. They agree on three points, he said:
-From the time of diagnosis, as early as possible, every patient with a serious illness that may be fatal should be fully informed of the range of ways they might be taken care of. Families should be informed as well.
-If the patient has preferences among that range, either for efforts to prolong life or for, say, as much time at home as possible, whatever those preferences are should be known, documented, and always available when decisions are going to be made.
-Those preferences should always be respected when a person receives care.
“Any other approach would be un-American,” Dr. Forrow said. “What we lack, however, is a health care system that reliably assures that this happens, not just sometimes but all the time, and our recommendations are designed to assure that.”
Just a glance at this graph is enough to see part of the problem: Most of us want to die at home; few do.
So what is to be done? The panel issued a long list of recommendations, including:
-A public awareness campaign, launched by next January, to educate people about their options and encourage them to plan for their own end-stages.
- Spread MOLST statewide by 2014. Medical Orders for Life Sustaining Treatment is a sort of end-of-life menu on a bright pink sheet that follows a patient wherever he goes. We wrote about it here.
-Also by 2014, require institutions that care for patients with “life-limiting” conditions to systematically identify patients who could benefit from hospice or palliative care and help them get it. Continue reading →
Horror stories about end-of-life care abound. Here’s mine. After a terrible car accident at age 56, my beloved mother lay in a vegetative state for nearly two years. She’d always been very outspoken about choosing death over life as a vegetable, so when all hope for any sort of recovery was gone, we brought her home to die.
It is illegal to kill. We couldn’t just give her an overdose. But we could “withhold care,” so we stopped her tube feedings to let her effectively starve to death. She lay in a hospital bed at home for nine days, slowly fading. Even knowing her wishes, and with support from the most saintly and sensitive hospice workers, it was a nightmare.
At one point, a hospice doctor told us that if my mother showed any signs of discomfort, her morphine dose could be increased. I remember snapping at him something like: “Why in the world would we wait for her to show ‘signs of discomfort’? Crank the morphine all the way up now! Why let there be even a chance of pain? The point here is for her to die, and if the morphine depresses her breathing and hastens that along, so much the better!”
It would have been good to be able to register a request for “absolutely maximal pain relief.” But there was no mechanism for that. There was no formal way to lay out our end-of-life instructions.
That is very likely to change soon. The coming thing for patients near the end of life in Massachusetts is a new official form that lets them discuss and document their choices for “life-sustaining treatments” — based on their own needs, their own preferences and what is medically appropriate. I think of it as “the final menu.”
Far more specific than a “Do Not Resuscitate” order, it asks: Would you want to be intubated? Put on a ventilator? How about dialysis? Do you want to be brought to the hospital, or remain at home? How about tube feedings? Anything else? (Personally, I think I’d write: “Please drug me up so intensively that I float into death in a happy morphine haze.” Doctors might not be able to comply, but I’d still ask. )
The form is not for everyone — unlike the health-care proxy form that everyone over 18 should fill out to designate a backup medical decision-maker. But if you have a chronic, advancing illness with no hope of recovery, you can choose to talk about your options with your clinician. Then together, and perhaps with your family as well, you convert that conversation into checks in boxes on the shocking pink form, called a MOLST, Medical Orders for LIfe-Sustaining Treatment.
The MOLST becomes a valid medical order, to be honored by all who treat you, whether the ambulance crew or nursing home staff or hospital physician. If you change your mind, you can always change your MOLST.
I call the MOLST the coming thing for two reasons: One, it’s not here yet. The form is available only in a small pilot project that has been running for just six months in Worcester, training hundreds of doctors, nurses and social workers to use the forms. The project’s managers are still evaluating it, and if it gets approval for use statewide, they want to roll it out carefully, possibly as soon as next year.
But two, those managers are already fielding frequent requests for the form, suggesting how popular it may become. The MOLST eliminates guess-work about a patient’s wishes, both for medical personnel and for families. And it is simply, appealingly explained in this 13-minute video.
“A lot of people hear about it, they see it, they want it,” said Andy Epstein, who co-chairs the MOLST steering committee as special assistant to the state public health commissioner. It involves “a process of discussing and communicating and ultimately honoring the patient’s wishes. and it’s very comprehensive — that’s the beauty of it.” Continue reading →