Courtesy of HuffPost.com | By Carol Marak | 04.04.2016
Most people avoid the topics of aging and dying like the plague, don’t you agree? Erica Hallock, the author of “Live Well, Die Well,” doesn’t think so and argues the opposite. She attended a conference on end-of-life concerns and discovered that the 800 chairs set up for the workshop were not enough. The community came out in droves to hear the meaningful conversation in Spokane. So, as a whole, our culture may not be averse to talking about the end of life.
The Institute of Medicine (IOM) believes the time is right for a national dialogue to normalize the emotions on death and dying. They think that the social trends point toward a growing willingness to share stories about the end-of-life care and that it will help drive more family discussions. In the IOM consensus report, Dying in America, experts found that accessibility of medical and social services could improve a patient’s life at the end. But if people don’t discuss which medical care or social services they want or not, how will their wishes be known and carried out?
Since 70 percent of ill adults become unable to express their care preferences, the separation between what they want, and what they receive is significant and usually is the result of misinformation. Having end of life discussions can put a stop to the discrepancy. IOM believes we can do this through public education and engagement.
My family experienced several deaths over the years. However, one, in particular, sticks out. It was my brother-in-law’s. The medical and hospital staff followed his values, goals, and educated preferences. It made the process for everyone more relaxed and comfortable. The best of all, it created the sacred space for good-byes, forgiveness, and regrets. To this day, the family remains in awe of that unprecedented event.
There is power in stories. And by sharing them, it’s my hope to encourage meaningful dialogue between individuals and their families about beliefs, care, and choices. By sharing personal events and accounts, fear will dissipate. Death is a process to appreciate, and family members should spend the time reminiscing not deliberating over medical treatments.
The Institute of Medicine also recommends that service providers stimulate advance care planning between clients and medical teams so that the individuals can make informed choices based on one’s needs and to make them known. To unlock the narratives of death and dying so that others become more comfortable with the topic, I asked the Seniorcare.com Aging Council,
“Share one example of a family or person/client who experienced a higher quality of care as a result of having an open talk with loved ones?”
Facilitate a dialogue
“A client who had been in and out of the hospital wanted to go home and stop treatment. The medical staff was concerned the person needed 24/7 care and recommended a nursing home stay. Our team facilitated a discussion/care plan with the client, family, and providers. The client enjoyed his last months at home with the support and the personalized care he needed.” Alex Chamberlain, Easy Living Fl.
“One family, I worked with was upset they couldn’t talk to their mom because she avoided the questions. When I confronted them about their affairs, they didn’t have them in order either. The kids approach was different with mom once they went through getting their wills in place and understood the process. They shared their wishes and then mom opened up about hers.” Scot Cheben, Caregiving Answers.
“Thinking of conversations on death and dying which have taken place with clients, I am reminded of one, in particular. With the husband’s work in the medical field, the importance of pre-planning for end of life was a given. The family put the legal documents in order, and the loving wife was comforted knowing her beloved died with dignity and free of pain.” David Mordehi, Advise and Protect.
“I moderate a family caregivers support group and witness the support of family members helping loved ones to opt out of treatments to prolong life and instead, to choose hospice care and enjoy the last months and days. Shelley Webb, Intentional Caregiver.
Share real end-of-life messages
“My mother, who died from Alzheimer’s, frequently talked about end-of-life choices and decisions. Her openness helped my sisters and me immensely. As Mom’s condition deteriorated, she could no longer communicate. However, we knew what our mom wanted because she had been open and honest about her death long ago. I now see those talks as a gift.” Nancy Wurtzel, Dating Dementia.
“A 91-year-old patient had difficulty with endings due to an early loss. Even though he experienced considerable discomfort after the medical treatment, we recommended hospice care, but he refused. After addressing the end of life concerns in psychotherapy, he consented. Read his story. Eleanor Feldman Barbera, My Better Nursing Home.
“My family has always been open to end-of-life discussions. When my father’s cancer was progressing, he called and enrolled in hospice and wrote his eulogy. Before he slipped away, I asked him if we had unresolved issues and he said “no.” He left detailed instructions for my mom, his wife of almost 60 years, on how to manage the things he did. The experience was powerful.” Marla Levie, Focus on Aging.
“My mother was diagnosed and passed away from cancer within four months. If she had not been willing to have conversations with my father and me about her situation, we would not have known her last wishes. It allowed hospice to do their job and my family to be at peace that my mother had made these decisions.” Ryan McEniff, MW Homecare.
End-of-life talks are a challenge to health care providers, but it’s one that’s families are ready to have.