BY: TERRY FULMER, RN, PhD, FAAN
When it comes to health care, what matters varies from person to person and differs depending on your state of health or illness. For one person, it might mean feeling well enough to care for an active young grandchild three days a week. For another person nearing the end of life, it might mean alleviating pain or being lucid enough to have one more conversation.
However, when we near death or become seriously ill and seek health care, what matters most to us often gets lost. As a nurse and in my personal life, I've seen families overwhelmed and completely frustrated with fragmented and unwanted care at this already difficult stage. They start to question whether anyone is listening. As Dr. Atul Gawande sums it up in his book, Being Mortal: "The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver's chance of benefit. They are spent in institutions — nursing homes and intensive care units — where regimented, anonymous routines cut us off from all the things that matter to us in life."
There is a better way. It starts with asking yourself what matters most to you, discussing that with family and others and demanding that your health care providers respond accordingly.
AGE-FRIENDLY HEALTH
Enter the age-friendly health system movement. An age-friendly health system would prioritize asking and acting upon what matters to us, especially as we age and become seriously ill. Health systems that are age-friendly incorporate programs and services specifically designed for this purpose.
For many, what often matters most is staying in their home and remaining close to family. Programs of All-Inclusive Care for the Elderly (PACE), a program funded by The John A. Hartford Foundation, is a model of health care that puts individual care goals at the center and helps participants stay independent as long as possible. There are more than 240 PACE programs in 31 states and those who are eligible — older adults who would otherwise move to a nursing home — can enroll to receive care on their own terms and in their community. This means their caregivers no longer have to juggle conflicting health care recommendations because care is centralized to one location. What's more, a team of multidisciplinary specialists are at the ready to coordinate and ensure that what matters most to the participant is at the core of every decision, especially if the person becomes seriously ill.
For others who face serious illness or are at the end of life, often what matters most is easing pain and suffering. Community-based palliative care can play a vital role, maximizing quality of life and daily function by allowing people to receive pain management and holistic care outside of a hospital, at home or in other community settings. Patients are linked to social and spiritual services and the patient's goals drive all aspects of care.
KNOWING PRIORITIES
For these programs to be effective, we must be able to identify and explain our own health goals and preferences, or those of a loved one we care for. Our clinicians can then work with us to design care that meets those priorities. The process requires constant conversation with our health care providers, and a willingness to keep those lines of communication open every step of the way. But it's well worth it. In doing so, we have the opportunity to replace care that is unhelpful, burdensome or even harmful with age-friendly care that allows us to live our very best lives, all the way until the end.
Make no mistake, getting older is gratifying and rewarding. We gain more wisdom and experience. We know ourselves better, we have opinions about how we are willing — or not willing — to spend our time, and research has shown that we are happier. As we age, we become more grounded in what's most important to us. We can't stop the process of aging or death, but we can continually ask ourselves what matters most to us and seek out care that honors those wishes.
TERRY FULMER is president of Manhattan-based The John A. Hartford Foundation, dedicated to improving the care of older adults. "What Matters" is reproduced with the foundation's permission. The text is part of "Living to the End of Life Special Report," © Next Avenue - 2018. All rights reserved.