This is a guest blog post by Carol Marak, an aging advocate, columnist, and editor at SeniorCare.com. Ms. Marak is a former family caregiver and promotes active aging. Contact Carol at Carol@SeniorCare.com.
The death and dying conversation is top news these days. The recent Medicare ruling allowing hospice payments to cover counseling sessions has placed renewed attention on end of life concerns. Healthcare services in the last year of life constitute roughtly twenty five percent of Medicare services. The new ruling aims to create better quality of care options for beneficiaries with multiple severe and complicated conditions.
Older Americans want to live out their last days at home, but only twenty four percent have the choice. The other seventy six percent pass away in a hospital or nursing home because conditions stand in the way of their preferences. According to the Institute of Medicine (IOM), we are in this situation because many patients, families, and physicians have not discussed and recorded what the individual wants in the event that he or she can no longer commnicate. In this situation, the medical profession does everything it can to prolong life.
The Institute of Medicine has concluded that people need help to manage the healthcare options and services received in emergencies, especially at the end of life. It is essential that families and patients discuss their goals and preferences for medical treatment and to select surrogates who will stand in for them if they cannot speak for themselves.
The Institute of Medicine report Dying in America argues for a national dialogue on death and dying. To make that happen, we need to share our stories. When people hear and read stories about how others cope under distress, it can help normalize otherwise dreaded emotions.
To understand how those in the elder and long term care space can help families and patients become comfortable with death and dying, I asked the SeniorCare.com Aging Council, an online platform for long term care experts, to share useful strategies that help individuals receive better care at the end of their lives.
Draw Up Legal Documents
“To have a positive outcome, one must have all legal documents drawn, but more importantly, one must express what they want and do not want. People should build a supportive team (palliative care or hospice many times) and advocates (family and professional) to say when enough is enough for medical interventions in their situation.”
-Shannon Martin, Aging Wisely
“Recently, a gentleman called because he just received a diagnosis of Alzheimer’s disease. He felt like his life was already becoming less of his own. Within a week of diagnosis, he hired an elder law attorney to help him prepare his powers of attorney and complete his estate plan, will, and trust documents. By taking action immediately, he was able to participate in the decision making process.”
-Kerry R. Peck, Peck Ritchey
“Make sure that the [Durable Power of Attorney] is up to date and shared with family members. [This document] ensures that everyone is on the same page at the time of a decision. When my dad got pneumonia, we knew what to do and didn’t have to agonize over what to do. I advise that people read articles, watch TV shows, and see others’ experiences as they transition.
-Donna Schempp, Elder Care Specialist
“Our matriarch built a notebook dubbed ‘The Nutshell.’ It contained providers, policies, documents, and even a glaring orange sheet, the front page, giving us instructions to follow at the time of her death. Whether we were distraught with grief, numb with shock, or stoic in crisis, her wishes could be carried out. It afforded structure, timeline, and task sto the persons charged with action.”
-Nancy Wurtzel, NC Navigate
Learn the Palliative Care Options
“Three relatives used hospice within the span of one year, making true believers out of us! Grandfather passed at home, rather than in a hospital, with a focus on pain relief and without extraordinary measures expended. His hospice worker shared guidance, which opened our eyes to the subtle transitions occurring before his passing, helping us face them without fear.”
-Stephen D. Forman, CLTC (Certification in Long-term Care), Long-term Care Associates, LLC
“Most in this situation are going to determine a course for treatment and pain management, or turn to hospice. As a family, we selected one clear path to facilitate the end. We eliminated some of the potential challenges and family dysfunction afterward since we agreed as a family in the care our loved one received.”
-Dr. Eboni Green, Caregiver Support Services
Have Detailed Conversations
“The client knew what he wanted from our conversations. He went to the hospital when his condition worsened, and he was able to stop his painful and futile medical treatments. He recognized the need for hospice and to say goodbye to his family.”
-Eleanor Feldman Barbera, PhD, My Better Nursing Home
“Everything they had discussed was in writing. They documented personal stories and made legal any necessary paperwork to facilitate their wishes. Our friends shared with us how important these things were in confidently proceeding with end of life services. The whole family was in agreement and knew they were following their father’s wishes.”
-Nikki Buckelew, Senior Real Estate Institute