At the Jewish New Year in the autumn, many people take the time to look back over the previous year and consider where they might have “missed the mark,” as well as where good deeds were done. As we approach another New Year this week, I am reflecting on both the gifts and advances that 2015 brought to the field of Palliative Care, as well as the ways in which we can work harder in 2016.
Successes of 2015
Recently, I took part in a panel presentation on Palliative Care for a Bay Area conference on aging. Kate O’Malley, a Senior Program officer for the California Healthcare Foundation and a brilliant nurse, commented, “Have you noticed that the leading Journal of Palliative Care is now the New York Times?”
There are regular weekly articles in the Times about Palliative Care, about Death and Dying, and Advance Care planning. There is also a section in the Huffington Post on Palliative Care and end of life issues. Our Palliative Care Program was featured in the California Health Report. There are “Death Cafes” and “Death and Dying Dinner Parties” happening all over the country.
This is a big success! Palliative Care has become a mainstream topic of conversation. The times they are a-changin’!
Continuing the Conversation
Those of us in the field of Palliative Care have been waiting 15 years for this critical mass to happen. Our mantra in our presentations, keynote speeches, and the books we’ve already written as well as the ones to come, has been that we live in a “death-phobic” culture and unless we can talk about this one major, inevitable journey that we are all going to take, we will never have the potential to have our dying time be anything like what we’d dare to imagine.
We say that we must dare to imagine it—we must have the courage to dream up what our death might look like, just like we have dreamed up what our lives might look like. If we want any amount of control over how we live the last years, months, days, and hours of our lives, we’re going to have to think about it, dream about it, imagine it, and then talk about it!
We must talk with our friends, our families, people on the bus, people stuck in lines, in waiting rooms in doctor’s offices, in hospitals. It is only through this open dialogue that we can eliminate the idea that death, dying, illness, and suffering are taboo subjects.
Most people don’t know how to talk about these things—but that doesn’t mean they should remain unspoken.
Opportunities for 2016
At JFCS’ Seniors At Home, our community-based social-service Palliative Care team is at the forefront of change. We are not a ‘medical model’—instead, we have an internal Palliative Care ‘task force’ that works to examine the gaps in Palliative Care services and to determine where we can make a difference by expanding our own services.
One of the challenges we face in opening the conversation about Palliative Care is that Palliative Care, which focuses on reducing physical, emotional and spiritual suffering in the face of serious illness, is often conflated with Hospice Care. Though the general understanding is beginning to shift, some clinicians still believe that a patient does not need palliative care if he or she is not dying. But studies have shown that providing palliative care early in the diagnosis of a serious illness not only improves the quality of life a person will have but it also can lengthen the quantity of their days on earth.
The integration of medical care and social services must be the wave of the future. If people are indeed going to remain in their homes at the end of their lives, then they (correction: we) will need access to all levels of services—that includes practical (such as home care and care management), emotional, psychological, financial, and spiritual care, as well as medical treatment.
How can we ensure this?
We must all take responsibility for the health and healing of each other and of ourselves. As we all work together, the times will continue to change.
We can demand comprehensive Palliative Care of our insurance providers, political representatives, and our healthcare institutions. Most importantly, we can support it in our own institutions in whatever ways we can.
It is critical that we continue to create conversations about difficult subjects such as illness, death, and dying, and that we show compassion for all people who are suffering. 80 million people are growing older before our eyes—it is our job to assess what we must learn in order to provide the necessary care for those who are aging now, and those who will follow in our footsteps.
This is the change that we must be part of to ensure the continuation of health on earth.
May we all have a happy and healthy 2016!
Redwing Keyssar, RN, BA, Director, Palliative Care, Seniors At Home/JFCS