Do you know how your family member wants to die?

At some point in the course of a progressive disease, there comes a time when doctors know the patient may not get better. But families who have a plan in place on how to move forward after their loved one loses ground are rare, according to Donald Guadagnoli, MD, chief medical officer for Cape Cod Healthcare

“What we hear all the time is, ‘I know he’s 90, but he was out on the golf course last week.’ That’s followed by, ‘You don’t know my dad. He’s going to bounce back from this.’

“What is largely masked is that dad was doing those things, but was also becoming increasingly frail, and the resiliency of a 90-year-old is not the resiliency of a 9-year-old.”

The U.S. National Institutes of Health’s National Library of Medicine estimates that about 100,000 people are chronically critically ill in this country at any one time. Most of these patients require mechanical ventilation and other intensive therapies. Most will never go home again because of profound impairments in physical or cognitive functioning.

It’s a problem that is difficult for everyone – patients, families and doctors. One of the hardest aspects of it is that in many cases these patients seem to be functioning well in the community even as their frailty increases. When they land in the hospital with an illness that is sure to progress in a negative way, their families don’t understand the consequences.

“The first place to be introducing this conversation is not at the bedside in the hospital where quite honestly the family is having one of the worst, most stressful days of their lives,” Dr. Guadagnoli said. “That’s not fair to anyone. It’s a great gift to everyone when the healthcare proxy can walk in with clarity about what the patient wants. The only way we can get that clarity is if the discussions have occurred.”

It’s About Life

This topic is not as much about death as it is about life, and how patients would like their twilight years to unfold, said Dr. Guadagnoli. He recommends that everyone over the age of 18 fill out a healthcare proxy and discuss their wishes around end-of-life care with that person and other family members. He also recommends that everyone with an advancing chronic illness fill out a Massachusetts Medical Orders for Life-Sustaining Treatment (MOLST) form, which spells out exactly what kinds of interventions you want or don’t want, should you be incapacitated and unable to speak for yourself.

An alternative also available is the Comfort Measures Only [pdf] form. In the absence of the MOLST or Comfort Measures form EMT’s are required to initiate resuscitationeven if that is not what a patient wanted.

The bottom line is that doctors will do whatever you wish – but they need to know what those wishes are in order to honor them.

Dr. Guadagnoli has had first-hand experience dealing with this crisis in his own family. Up until a year ago, his parents were still living at home. His 87-year-old father was able to care for his housebound mother with some respite care a few times a week so he could do errands.

“Then my father was hospitalized with pneumonia last summer,” he said. “After the pneumonia, clearly his memory never really recovered to a point where we could feel there was any safe way he could be managing my mother’s medications. It was pretty obvious that if he drove somewhere he might or might not remember, not only where the car was, but how to get home afterwards.”

His parents moved into assisted living and his father had a stroke in the autumn, removing all possibility that he could continue to provide adequate care to his mother. When Dr. Guadagnoli visits, his father has difficulty remembering what he ate for dinner.

“That’s not an atypical kind of a story,” he said. “He was functioning fine. He was safe, he was managing my mother’s medications and then he got pneumonia.”

Quality of Life Task Force

His personal story and the stories he sees unfold every day at the hospital have made Dr. Guadagnoli a strong advocate and leader in Cape Cod Healthcare’s Quality of Life Management Task Force. The group first convened in October 2015 with a conference that included about 175 people who are somehow involved in elder care and/or medicine.

The task force currently meets once a month to discuss how to get the community at large to discuss advanced care planning. Hospice and palliative care expert Tina Soares, RN, is the program manager and has now trained many volunteers and health care workers to facilitate these discussions.

“What we’re doing with advanced care planning is at the core of palliative care,” she said. “It’s giving the patient important information and education about choices and treatment. It’s not unlike what a pediatrician does. When you go in to your pediatric visit with your child, there is always the anticipatory guidance and teaching portion about the next milestone, the safety, what they can eat and can’t eat. We should be offering the same anticipatory guidance for disease progression or managing symptoms. We should do what pediatricians do, only on the other end.”

The ultimate goal of the task force is to bring this conversation to every church, synagogue, library and senior center so that within five years doctors and families will no longer have to look at each other over the bed of a patient unsure of how to proceed.