Published on October 17, 2015

Planning for the end of life

Planning for the end of life

Suzi Johnson had a message for Cape Cod Healthcare’s summit on end-of-life issues: Death is not for sissies so you sure as heck better have a plan.

Actually, make that the community better have a plan.  And Johnson, the vice president of Sharp HospiceCare in San Diego, and her colleagues have ideas on how helping seriously ill patients avoid hospitalization and plan for what one called the “twilight years of life experience” not only restores dignity but saves money.

“We can do this, we can make it possible to have what you want, where you want, when you want, as you face the completion of your life,” she told the 200 or so health care providers, emergency-medical personnel, elder services representatives, and clergy at the first Quality of Life Management Summit, held Oct. 14 at the Cape Codder Resort and Spa in Hyannis.

Dr. Donald Guadagnoli, senior vice president and chief medical officer of Cape Cod Healthcare, and others want to start a community conversation about how and where people die. Too many patients with advanced illnesses, such as chronic heart failure, die in intensive-care units hooked to life support, despite their wishes to die at home in their own beds, they say.

The reason? Not enough planning by patients, not enough training for doctors in prognostication, and a medical system that tends to be reactive rather than proactive, several summit speakers said.

“On a daily basis at Cape Cod Hospital, we see people who aren’t going gently into the night,” Guadagnoli, told the summit. “It’s really not fair; it’s not fair to our patients, it’s not fair to their families.”

Representatives of Sharp HealthCare in San Diego were invited to the Hyannis conference to explain that company’s Transitions Advanced Illness Management System – a way to manage care for congestive heart failure, chronic obstructive pulmonary disease, Stage IV cancer, geriatric frailty, and end-stage liver disease.  These conditions typically result in multiple re-hospitalizations that are not only expensive but can result in a patient getting sicker from, say, a hospital-borne illness.

“The power of what we do for people … you can’t replace it,” said Johnson. “This isn’t a test or procedure. This is humanity.”

As described by Johnson and Dr. Daniel Hoefer, chief medical officer for Sharp’s outpatient palliative care program, the Transition program is based on four main principals:

  • Be proactive. The Transitions program is a pre-hospice program that helps patients at risk of re-hospitalization. It begins with four to six weekly visits to a patient’s home by a registered nurse case manager who helps manage existing treatment plans or medications. Armed with an understanding of the patient’s lifestyle, nurses stay in touch by phone and make house calls as necessary. They are available 24/7 and provide an option other than a trip to the ER. They also help patients with preparation of an end-of-life care plan.
  • Get real. Patients are educated to understand that at the age of, say, 85, resuscitation does not look as tidy as on TV. It entails broken ribs, pain, a breathing tube and a trip to the ICU. Doctors and others in the community are trained to help people document their wishes about treatment at the end of life.
  • Look ahead. Doctors are also trained to predict the evolution of disease and to discuss that with patients. Sharp has revived what Hoefer considers the lost art of prognostication. Doctors need to know “the next event in the expected series of events,” Hoefer said.
  • Keep communicating. The Transition team acts as a communication hub with the patient and doctors so a patient can be stepped up into an actual hospice program, or, if improving, moved out of Transitions.

 Sharp has cut the number of people with certain advanced illnesses dying in ICUs by 80 percent, said Dr. Hoefer.

The next step for the Cape community is to continue the conversation at a meeting Dec. 2 at Cape Cod Healthcare, Guadagnoli said.  He wants to train the trainers – teaching discussion leaders to get the community talking about end of life documents such as the Five Wishes and MOLST – Massachusetts Medical Orders for Life Sustaining Treatment.

“If the patient hasn’t had that discussion in the libraries, in the senior centers,  with their families and health care proxies we are behind the 8 ball,” he said.  “This gives patients choices and allows us to honor those choices.”