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.”
The MOLST is the most concrete aspect yet to emerge from a sweeping state evaluation of how to make end-of-life care here better, Ms. Epstein said.
An expert end-of-life panel plans to submit its final report to the Patrick administration, including support for the MOLST program, within weeks. But it doesn’t take a panel to determine that end-of-life care needs fixing here and across the country. From this memorable New Yorker piece titled “Letting Go” to Medicare’s finding that more than a quarter of its budget is spent on the last year of patients’ lives, it’s clear that the American medical system has a lot to learn about managing “a good death.” And that billions are spent on care that patients don’t actually want.
Projects similar to the MOLST are under way in two dozen other states, usually under the name of POLST, with the P standing for Physicians’. As with many things death-related, Oregon is leading the way. It has had its POLST forms since the 1990s, and has now even put into place a statewide electronic registry for all end-of-life orders.
But the idea is sweeping the country, as you can see in the map provided by the “POLST paradigm” project based at Oregon Health & Science University.
Of course, there was all that political fuss about “death panels” as part of the health reform debate. That was worrying, said Dr. Mary Valliere, a palliative care specialist at the University of Massachusetts Memorial Medical Center and medical consultant to the MOLST pilot team. But death panels “are exactly what we are not doing.” she said. “I do think people understand that [MOLST] is completely patient-focused and patient-driven.”
So how has it been going? These are early days yet — only about 150 patients have filled out the forms and the project evaluation will run through December. Experience is so limited that the MOLST team couldn’t find me a patient or physician with a telling story to illustrate it.
But in general, the response has been so uniformly positive that Dr. Valliere is almost waiting for the other shoe to drop, she said. (She’s a palliative care doctor, she pointed out; in her field, things tend to get worse.)
“Originally we were very conscious that this was another new form, another new process that we’re asking health care professionals to use, in an attempt to make things simpler, that in some ways could have made their jobs more time-consuming,” she said.
“But my overwhelming impression is that people have really embraced it. They do see it in the context of documenting the time and attention they’ve given to important conversations with patients, and they can hand that on to the next person in the health care system caring for the patient. It really does help to save time as well as the major goal — to provide better care, more consistent with what patients want.”
Patients and their families have tended to be very open to talking about the form, said Christine McCluskey, the MOLST outreach coordinator. There is no clear trend so far as to their choices, she said — some want all possible treatment, some decline certain options.
Initial experience suggests that the current form — an 8” by 11” sheet of paper — may be a problem, she said, because it has a certain tendency to get lost as it follows patients between health care settings: nursing home, hospital, home, rehab. Do Not Resuscitate forms are brief enough to be put on a bracelet, but the MOLST carries more information. One possible option is to shrink the sheet down to a laminated card, she said.
The project is in too early a stage to determine whether patients’ wishes as expressed on the MOLST have been followed, Ms. McCluskey said. But a recent study on Oregon’s program found that in fact, the POLST program there did indeed help patients have their wishes honored near the end of life.
In short, it’s all looking good — maybe a little too good.
Said Jena Adams, the MOLST project director: “My main concern right now is that so many people want this, there’s huge interest in it. But I think we’re going to recommend strongly that there be a strategic process for statewide rollout, so people receive the appropriate training and so there’s fidelity and it’s used correctly. The last thing we want is to just put a form up there on a Website and have people using it in all kinds of ways that were maybe not intended or are uninformed.”
But it’s a Do-It-Yourself world these days, I pressed her. I really like the look of the form. Why not just print it out and use it? And spread it around among friends and relatives who may be near the end?
It took some doing, but Ms. Adams dissuaded me. The form is not supposed to be filled out by patients, she emphasized. It’s a medical document that has to be completed by a clinician, and signed by both doctor and patient, or it holds no authority and may not be honored. And as a patient, you need your doctor’s expertise to help you understand your outlook and your options.
If the form is appealing, she said, you can print it out and talk about it with your health care proxy or your doctor, if you’re near the end of life.
“It’s really intended as a communication tool among clinicians” she said. “That’s what medical orders are. And it’s a way to transfer information from one health care professional to another across settings. But the excellent part is that it’s all based on patient preferences.”
Unlike the form, she added, “the real conversation that has to happen isn’t full of medical jargon. It’s about your values and quality of life. ‘This is what’s important to me: I want to live long enough to see my grandson graduate from college, or I don’t want to be in the hospital in the ICU for weeks on end, or I don’t want to not be able to communicate with my loved ones.’ How that connects with all the medical treatment options and decision-making, that’s where the clinician has to come in and connect the dots, and figure out a plan that’s going to best meet the patient’s desires.”
“It just points to the importance of those conversations,” she said.