Palliative Chaplaincy at PACE
In 2009, Palliative Chaplaincy had not yet emerged as a specialty to be certified. Chaplains in a variety of settings had some occasion to provide Palliative Chaplaincy. Some settings call primarily for Palliative Chaplaincy. One setting that requires only Palliative Chaplaincy is a program called “PACE” – “Program for All-inclusive Care for the Elderly.”
PACE Centers work with people who are elderly, frail and poor. The goal is to keep them living in the community as long as possible. Besides spiritual support, PACE provides comprehensive care: medicine, social work, nutrition, transportation, and recreation.
PACE attempts to create the kind of natural community in which people care for one another through natural bonds. A Cambodian community in San Francisco, On Loc, provided the model. People who feel a sense of community tend to live longer. People who live independently tend to need less costly care. PACE promotes caring that makes good sense to everyone involved.
We call the people in the program “Participants.” The term “patient” implies passivity and denotes people to whom things happen. The term “participant” implies freedom of choice and denotes people in charge of their own lives. Our members participate in all phases of the program: d\Do I want to join? Do I want to come to the Center? How often? Do I want to join in any, some or all of the activities?
The National PACE Association describes the average PACE Participant in this way:
In order to qualify for PACE, a person must be 55 years of age or older, live in a PACE service area, and be certified by the state to need nursing home-level care.
The typical PACE participant is very similar to the average nursing home resident. On average, she is 80 years old, has 7.9 medical conditions and is limited in approximately three activities of daily living. Forty-nine percent of PACE participants have been diagnosed with dementia. Despite a high level of care needs, more than 90% of PACE participants are able to continue to live in the community.
The PACE Center where I was Chaplain served Participants ranging in age from 58 to 101. Most chose to stay in the program until they died. This gave us an average of about 2.8 years to work with each of them. It also required us to deal often with death and bereavement.
The program was called “Finishing Well.”
The frail elderly we serve tend to experience their lives as in retreat: physical health wanes, mental acuity dims, social relations fade. Even those with strong family support tend toward depression and are tempted to despair. They may feel they are losing slowly the last battle, with death. They could see themselves Finishing Well the last phase of life.
PACE can help transform this worldview. Our colonial forebears called it Dying Well. I prefer “Finishing Well” to make clear to our generation what was obvious to theirs: the last phase of life is only partly something that happens to us, but also something we do, and can do well. The tasks of the last phase of life include:
Cultivating gratitude resting from labor reflecting on what “is very good” savoring an inventory of memories Making peace forgiving oneself forgiving others asking forgiveness, directly or symbolically preparing to meet one’s Maker Providing legacy passing on property to do no harm passing on stories as heritage family stories community stories Passing on character as blessing dispensing wisdom reflecting on life lessons distilling wisdom in story or saying Offering wisdom to those who will hear dying well arranging the Family Vigil tradition expressing the Last Words tradition
We may not help any Participant achieve all of these, but we can help every Participant achieve some of these.
We look pro-actively for opportunities, and work as a team, to fulfill the spiritual/religious component of our “all-encompassing care for the elderly.” As your Chaplain, I will serve you any way I can.
The Finishing Well program was well received by the Staff. National PACE Association selected it for presentation at the National Meeting in 2010.
To implement Finishing Well, I developed four programs:
I am like I AM – for individual spiritual care
Songs and Stories – for corporate spiritual care
Finding Meaning in Suffering- for end of life counseling
We Remember – for bereavement
While doing so, I began to wonder what programs in Palliative Chaplaincy were being developed at other PACE Centers across the nation. Were each of us trying independently to invent the wheel?
From the National PACE Association I obtained a listing of all PACE Centers in the country. (There were then 77, and are now 92). I e-mailed “Chaplain” at each Center. Results were spotty. I then e-mailed the Director of each site requesting the name of the person in charge of spiritual care. After several rounds of correspondence, about half the PACE Centers were found to have chaplains. About a quarter had someone else – a social worker, the compliance director, whomever – tasked with handling spiritual care in addition to their full-time responsibility. About a quarter provided no spiritual care to speak of, or at least mentioned none.
National PACE Association sponsors a Colloquy for each profession to promote collaboration and excellence. Through National PACE, I sent to all known PACE chaplains an invitation to share their best practices for palliative chaplaincy.
Several dozen “best practices” arrived. Some seemed a little sketchy. From those chaplains, I requested a program description detailed enough that another chaplain who valued the program could replicate it. I offered this framework for presenting best practices:
Dear Fellow PACE Chaplains:
Thank you each for responding. Having read through your ideas, it seemed helpful to find a way to order them. The definition of spirituality published in The Journal of Palliative Medicine offers a foundation:
“Spirituality is the aspect of humanity that refers to the way individuals seek and express meaning and purpose, and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.”
“Improving the Quality of Spiritual Care as a Dimension of Palliative Care: The Report of the Consensus Conference”
The Journal of Palliative Medicine, Volume 12, Number 10, 2009
This definition refers to meaning and belonging.
PACE can benefit Participants as much spiritually as medically. Many of our folks spent their days mostly alone, watching TV. As one of them told me, “Those people on TV talk a lot, but they never listen.” Coming to PACE can help Participants to have friends, community, and encouragement. Some lost fifty or a hundred pounds that needed to be lost. Some learn to walk again. They get a life.
Their experience in PACE can be described as
Getting a life (joining)
Living the life (participating), and
Finishing their life (dying).
Combining this timeline with the definition of spirituality creates this structure for spiritual care:
Getting a Life Living the Life Finishing their life
Meaning: _____________ ______________ __________________
Belonging: ____________ ______________ __________________
In trying thus to organize the spiritual practices you so generously sent to me, I soon learned that I simply don’t understand them well enough to do this. Mostly, your responses listed spiritual practices without detail about how you do what you do.
Would you be willing to send me your best practices in detail? You can use the format above. You don’t have to detail all you do, just pick the few you think you do the best.
I will share the results with all known PACE chaplains.
Thank you! I’m looking forward to seeing the specifics of your best practices.
All submitted “Best Practices” were forwarded to all chaplains. Each chaplain could learn what wheels were rolling elsewhere, and innovate rather than invent to meet the need at their center.
I asked for volunteers to serve on a Selection Committee to select the best practices from among the submissions. Several chaplains volunteered. They considered several means of recognizing Best Practices. The first option would select a first, second and third place winner. This would make the adoption of standards a matter of competition rather than achievement, so was rejected. The second option would select a winner in each of several categories, such as Spiritual Assessment or Bereavement. This had the appeal of specificity, but the danger of becoming too fragmented, like the Oscars – “best supporting actress in a black-and-white documentary.” The third option would be to honor each submission that had sufficient detail to be replicated as a Best Practice. The committee met by conference call and selected options two and three.
St. Martin’s Cloak
A vigorous discussion ensued about what to call the Best Practice Awards. Etymology lifted the winner: St. Martin’s Cloak. In the IVth Century, a young Roman cavalry officer named Martin was entering the gates of Tours when he saw a freezing beggar. Martin cut his heavy crimson cavalry cape in half for the poor man. His act gives us our title as Palliative Chaplains.
He cloaks – Latin palliare – gives us the verb Palliate.
His cloak – Latin capella – gives us the noun Chaplain.
St. Martin’s Cloak was printed on tabloid paper (11x17). It looks like this.
National PACE Association framed and sent the awards to the chaplains who had developed the Best Practices.
The PACE Center where the chaplain worked usually arranged a formal presentation by a senior official, done in the presence of the Participants. This encouraged the Participants by knowing the spiritual care they were receiving was some of the best in the nation.
Hopefully, this also may encourage the senior officials to appreciate the value of their own chaplain in particular and the need for full-time professional chaplaincy in general.
Lessons learned from this project might include the following:
1. Collegial Collaboration improves the quality of palliative chaplaincy. Rather than inventing the wheel, we can innovate to adapt and improve proven designs.
2. The Analytic Grid combining a standard definition of spirituality with phases of care could be useful in any institution – hospice, for example – that involves joining, participating, and leaving.
3. St. Martin’s Cloak could be extended to chaplains in other institutions or societies to recognize and encourage excellence in palliative chaplaincy. For example, the Virginia Chaplains’ Association is considering its use. Anyone interested is invited to contact me: firstname.lastname@example.org.
Palliative Care has become the first Board Certified Specialty for chaplains. Various certifying bodies are developing programs to that end. The College of Pastoral Supervision and Psychotherapy has in 2013 allowed Board Certified Clinical Chaplains working primarily in palliative care to earn Board Certification as Fellows in Hospice and Hospital Palliative Care.
As our population ages and technology improves, people will be living longer with chronic diseases. They will require palliative care. Palliative care was first recognized as a specialty for doctors only in 2006. Now, interdisciplinary teams of professionals certified as palliative doctors, nurses and social workers will need chaplains who are peers.
Following education in Philosophy (Stanford), Theology (Yale) and training in Psychology (Jung Institute), he spent ten years serving a dirt-poor parish (Appalachia) where God made him into something usable. Current palliative care tries to help patients in crises and at End of Life find meaning in their suffering.
He belongs to the Hampton Roads Chapter of CPSP, and is certified as Clinical Chaplain, Pastoral Counselor, and Fellow in Hospice and Hospital Palliative Care.