Senior living must be part of the effort to ensure that Americans with serious illnesses receive person-centered care that honors their goals, values and preferences, Atul Gawande, M.D., M.P.H., testified at a Senate Special Committee on Aging hearing on Thursday.
The surgeon, Harvard professor and author of the New York Times best-selling book, “Being Mortal,” said that a campaign and federal support are needed to ensure “that we have a clinical and elder care community with better systems and skills for discussing serious illness care goals and priorities with individuals and their families.”
Gawande, co-chair of the Massachusetts Coalition for Serious Illness Care, launched in May, said the coalition plans to work with assisted living communities, home healthcare agencies, other elder care providers and additional groups “to increase opportunities for people to identify a healthcare agent and communicate the goals and priorities they most want their caregivers to serve.”
Quality measures for elder care and nursing homes, however, must expand their focus beyond safety and health to include other domains of wellbeing, he said.
“If there is any single, consistent lesson that I learned in my research for my book ‘Being Mortal,’ it was that people who face serious illness or infirmity fear more than anything losing their autonomy, their ability to control the purposes and parameters of the care that they receive,” Gawande said. “Care plans and quality measures for nursing homes and other settings, however, focus almost exclusively on narrow issues of health and safety like fall prevention, management of feeding tubes, nutrition, pressure ulcers and so on. These are important, but just as, if not more important to people who need help with their needs for day-to-day living is the ability to have a say over matters like privacy, the risks they are permitted to take, when they go to bed and when they wake up, how they furnish and decorate their rooms, opportunities to pursue purposes larger than just mere existence, and who will make decisions when they cannot.”
Gawande said that the proposed Care Planning Act of 2015 (S. 1549) would strengthen quality measures in some settings, and the proposed Palliative Care and Hospice Education and Training Act (S. 2748) would invest in palliative care specialty training, but “the most important thing we can do is widen our intentions in healthcare and elder care to recognize that wellbeing for people, especially those facing serious illness, is larger than merely survival.” The goal, he added, “is to have as good a life as possible all the way to the very end.”
Gawande was a featured speaker at the 2012 and 2015 LeadingAge annual meetings.
Remembering those with Alzheimer’s
Sen. Susan Collins (R-ME), committee chairwoman, said that the principles of person-centered care, including end-of-life care, also must be applied to those who have Alzheimer’s disease.
Medicare eligibility requirements prevent some people with dementia from accessing hospice care, she noted. “As a consequence, Alzheimer’s patients — who could benefit from the better pain control, fewer hospitalizations and greater family satisfaction that hospice provides — are under-enrolled in hospice.”
Also, Collins added, hospice workers aren’t always sufficiently trained or prepared to meet the special needs of those with Alzheimer’s and their caregivers, since they have more experience caring for people who have cancer.
Less than 50% of people who have Alzheimer’s disease, or their family caregivers, are even informed of the diagnosis, said hearing witness Amy Berman, a senior program officer for the John A. Hartford Foundation. “Understanding where you are in terms of your overall health is one of the key components to a person’s participation in decisions about one’s care,” she said.
Care planning also is vital to ensuring that seriously ill individuals receive the proper care, said Berman, who is terminally ill with stage IV inflammatory breast cancer. But care planning, she said, “is more than just advance care planning and the end of life. Care plans include goals-of-care conversations over time and specifically before critical choices about treatment need to be made.”
Sen. Sheldon Whitehouse (D-RI), the ranking member at the hearing, told attendees that he introduced the Removing Barriers to Person-Centered Care Act on Thursday. In part, it would allow Medicare beneficiaries to receive hospice care and curative treatment at the same time, cover Medicare beneficiaries in skilled nursing facilities without a consecutive three-day inpatient hospital stay, and permit Medicare beneficiaries to receive home health services without having to be homebound. Under current rules, he said, home health services are denied to those who are seriously ill but still mobile.