Uncle Dave, after he finished his new Frozen Puzzle
Today, as a result of advances in technology, health, and personal care are more complicated than ever. The healthcare team can work miracles on the most complicated patients, yet at the same time struggle with how to manage and communicate with patients and families on how to make their final transitions in a safe and comfortable manner once aggressive treatment is no longer working.
Recently our family said goodbye to our Uncle Dave. Dave was a man who brought joy to those who knew him. Dave was a special needs person who required lifelong care and supervision, yet despite this led a wonderful life. His parents raised him to be as independent as possible. After their death, Dave lived in his family home for an additional 15 years which was a tribute to them. He then to moved to his brother’s home where he was part of a caring circle of family and friends. About six years ago, Dave came to live with my husband and I in South Florida.
Dave was a man of routines but loved to laugh and remember his parents, brother, and friends. He loved jigsaw puzzles, listening to Polka music and watching his favorite shows on TV. Dave had a great memory. Even when you thought he was not listening to a conversation about a relative or friend, he would come up with a name, or an address that no one else could remember.
Over the past few months, Dave’s health declined and required admissions to the hospital for various problems almost weekly. Eventually, his speech became slurred; he was not eating and was mostly in bed. On his last hospitalization, the doctor recommended that we consider Hospice as he was not responding to aggressive treatment. We knew our goal was to keep him comfortable when he no longer was benefitting from aggressive care. So we agreed to have Hospice step in.
As a result, Dave was able to come home where he was comfortable. Due to labored breathing, he was put on crisis care which allowed him to have nursing care 24/7. The hospice nurses were informative, caring and gentle. It was comforting to my husband and I to see Dave resting comfortably. Two days later, on August 27th at 7 am Dave transitioned quietly.
We were lucky that we had a doctor who recommended hospice care. It was the right decision at the right time. Yet, many patients and family members do not get to experience hospice or palliative care and suffer (many times needlessly at the end of their lives). This is because talking about death is uncomfortable and as a result, the discussion is put off.
For the same reason, members of the healthcare team don’t bring up alternatives to aggressive care such as palliative care or hospice care. This is unfortunate as these tools allow a person who has a chronic illness or a terminal condition to receive care that can help manage their symptoms so they are comfortable as well as to receive support services that assist caregivers manage them and prepare for their final transition of care.
Preparation for the final transition is so important that the Centers for Medicare and Medicaid are proposing paying physicians to ensure there is end-of-life counseling. This patient-centered policy is intended to support a careful planning process that will benefit the patient and the family. All members of the healthcare team will benefit from learning about the end of life alternatives both personally and professionally. To start you on your journey, I have included the following resources for you to review.
A Very Special Journey: Handbook from Hospice to inform and educate patients and family members about what to expect as patients experience their final transition http://hpbc.com/pdfs/literature/very_special_journey.pdf
Frequently Asked Questions for Palliative Care and Hospice Care http://palliativedoctors.org/faq
Optimal Healing Environments in Home Hospice and Palliative Care; http://www.cmsatoday.com/2015/08/18/optimal-healing-environments-in-home-hospice-and-palliative-care
Samueli Institute: https://www.samueliinstitute.org/research-areas/optimal-healing-environments/ohe-framework
National Decision Day: National Healthcare Decisions Day (NHDD) exists to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD is an initiative to encourage patients to express their wishes regarding healthcare and for providers and facilities to respect those wishes, whatever they may be. To learn more visit the website at http://www.nhdd.org
Being Mortal: Medicine and What Matters in the End. Atul Gawande. This is a book by Dr. Gawande that I would highly recommend. He reviews how we age and the challenges that come with aging. The book will make you think and allow you the opportunity to ensure your final transitions meet your goals.
Very moving Anne.
As a mother of a significantly disabled adult, I was touched and impressed with the level of support Uncle Dave received from your family. He was a lucky man.
RIP Uncle Dave…
Thanks for your note Donna…yes, Dave was very fortunate…to have parents who had the foresight to plan for his future and a brother and nephew who took up the challenge after they passed. I am sure your child will also do well…..have a good weekend
Great work, Anne! It seems as health care has become more hectic and money-driven, providers spend far more time just keeping up and getting by, and far less time thinking past the current moment. Plus, the traditional do-everything mode is far more lucrative than hospice, and profits have become the top priority in many if not most areas of American health care, at least from a management perspective. Patients pay a heavy price, and it's nice to see a case where they didn't get chewed up in the money mill.
Your piece reminds me of the initiation ritual they used in a Pre-Med group in college: it involved knight imagery, bravely fighting the enemy Death. A philosophy major, I'm used to examining ideas closely. I thought, "Don't they all realize that the way they're framing the practice of medicine, they're promising themselves certain failure in every case? We all die, after all." Medicine today seems to still largely not get that message, pretending that we save lives. We don't, of course. We don't prevent death, we merely delay it. From this perspective, preserving quality of life seems a far more practical goal in man cases. That goal we can achieve.
Simply lovely, Anne. This post touched my heart. And the resources at the end that you reference are wonderful. A true blend of art and science. Great work!