Many doctors and patients don't talk about how to handle the pain, disability, or despair that may accompany a serious illness or imminent death. Hospital leaders can push for greater competency in advanced planning among clinicians.
Medicare may reimburse primary care physicians for end-of-life talks with patients, but those conversations between seriously ill patients and their doctors often don't occur, even when patients are being treated for serious illnesses.
A survey by the Massachusetts Coalition for Serious Illness Care shows that 85% of Massachusetts residents believe that physicians and their patients should talk about end-of-life care, but only 15% have actually had such conversations.
Working with healthcare delivery systems will be one of the coalition's most important tasks, according to Atul Gawande, the coalition's co-chair and a surgeon at Brigham and Women's Hospital in Boston.
Related: Click to see the Survey
Gawande, who responded to email questions from HealthLeaders, is also author of the bestseller on end-of-life care, Being Mortal.
"Hospital leaders have an opportunity to reduce suffering and improve patient well-being by making these conversations a routine part of care," he wrote.
"To do that, they can train clinicians to have these conversations, adopt processes to identify at-risk patients who would most benefit from these conversations, and invest in systems that support the clinicians, patients, and families."
Some forms of end-of-life care are improving, he acknowledges. The percentage of patients getting hospice services and other forms of palliative care has been rising steadily.
The more persistent problem, however, is poorly executed or over-aggressive end-of-life treatment, which may occur well before a patient qualifies for hospice.
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Those with serious or chronic conditions may not want more therapeutic care if it means a reduced quality of life, a painful procedure, or an expensive long shot at a cure.
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The survey suggests that many doctors and patient don't routinely talk about how to handle the pain, disability, or despair that may accompany a serious illness or imminent death.
Training providers to have those conversations is the biggest challenge of improving end-of-life programs, says Patricia M. Noga, the vice president for clinical affair for the Massachusetts Hospital Association, which is a member of the serious illness coalition.
Everyone on the care teams need to be both competent and comfortable talking to patients, she says.
Conversation Works Both Ways
Patients need to be open to discussing issues as well. But the Massachusetts survey found that 34% were uncomfortable talking about the topic. Another 21% said they preferred to wait for doctors to start the conversation.
The coalition's efforts fit into much of the work the MHA has been doing for since 2009. Noga says. It has made advanced planning and end-of-life care a priority by educating members, participating in research, and working closely with other groups.
The topic has surfaced in discussions about how to prevent hospital readmissions. Currently, the group is working on a survey that will ask members how they are implementing end-of-life programs.
Nationally, other hospital, healthcare and caretaker organizations are also working on the issue. The American Hospital Association lists 11 state programs on its website including Texas, California, and New Hampshire.
More than 90 million Americans live with at least one chronic illness, and seven out of ten Americans die from chronic disease, according to the Dartmouth Atlas of Health Care.
Low Patient Satisfaction
Hospitals concerned about patient's satisfaction should know that 30% of survey respondents said that providers did not follow a friend or family member's end-of-life wishes. Twenty percent described the end-of-life care they witnessed as fair or poor.
Source: Massachusetts Coalition for Serious Illness Care
Ultimately, advanced planning is something that needs to be built into training for all members of the care teams, including physicians, nurses, physician assistants, nurse practitioners, social workers and case manages, Noga says, echoing Gawande.
It needs to be a "a competency you achieve through educations, that you achieve in your practice, and is supported in your care setting," she says.
Tinker Ready is a contributing writer at HealthLeaders Media.