We live in changing times in medicine. After decades of achieving longer life we are awakening to the need for the human side of care again. Medicine is complex and its aggressive treatments require intense commitment and energy.
Many find these treatments are worthwhile at the beginning of a serious illness but often too draining when one’s energy is depleted. Families as well as patients become exhausted. No one wants to “give up early,” so most press on even when common sense urges more comfort-focused treatment.
We know more is not better when the treatment causes more burden than benefit. But when is that the case? That is often not a simple decision. Your life expectancy (prognosis) informs you and your doctors when that is likely.
When confronted with serious illness there are two resources for getting the support you need, hospice and palliative care. Hospice focuses on superb comfort care at home or in a hospice residence like the Fisher Home in Amherst. It is for people in the last six months or so of life. Palliative care treats people with months to years of life expectancy. This care consists of home health aides, physical and occupational therapists, social workers, nurses and physicians working in a team to smoothly help people get back to their best possible health and return to their lives.
We all want the best quality of life for as long as possible. Each of us, however, will choose our own path of care as we navigate the choices offered by physicians. I tell my patients that my mom wanted no resuscitation and accepted her fate when the time came to go with her God. My dad has chosen all types of resuscitation if needed (except a feeding tube which would deprive him of eating his beloved ice cream and cookies).
Your treatment should be tailor made for you based on excellent informed conversations.
This Saturday is National Health Care Decisions day. In our valley, librarians have teamed up with Cooley Dickinson and its Visiting Nurse Association & Hospice to bring over 20 Community Conversations to the Valley and Hilltowns. Over a dozen of these have been book discussions of Atul Gawande’s “Being Mortal.” Five years ago when we first started our outreach about getting the care you want we routinely had fewer than a dozen people attend. In the past six weeks we have had up to 100 people at our library meetings. The purpose has been to share stories and ask questions of our volunteers and medical professionals. It has been amazingly rewarding.
Our culminating conversation will be Thursday at 6 p.m. at the Edwards Church in Northampton. Vicki Jackson, MD, a national expert in palliative care from Massachusetts General Hospital, will speak to our community about having the important discussions to get the care you want. She has studied why it is often so hard for patients, families and medical experts to have good discussions before a crisis happens. She will share her insights and answer questions.
On Saturday, CDH will have Leslie Kelly, NP, and volunteers available at Thornes Market from 10 a.m. to 2 p.m. to hand out the two key forms that help you get the care you want. The Health Care Proxy form is for those 18 years old and over and specifies who will speak for you if you are unable to tell your medical team your care wishes. The second is the bright pink MOLST form (Medical Orders for Life Sustaining Treatment). For those with serious illness it allows you to state what treatment you do or don’t want.
Whether you are more like my mom or my dad, these forms allow your voice to be heard if you find yourself in an emergency. Join our community discussions.
Jeffrey Zesiger, MD, is director of palliative care and hospice, Cooley Dickinson Health Care.
Registration is needed for Dr. Vicki Jackson’s talk on Thursday. Visit cooley-dickinson.org and in the right upper part of the screen click “classes and events.”