Written by
Denise Hess, MDiv
Executive Director, Supportive Care Coalition
What do we mean when we say palliative care is care for the whole person? Our usual answer is palliative care attends to the body, mind, spirit, emotions, social setting, network of relationships, and other aspects of a patient’s “whole person.” Described this way, providing whole person care may sound like an overwhelming task for a solo palliative care clinician. Palliative care requires an interdisciplinary team or, in words attributed to Balfour Mount, “Whole person care requires a whole person. Until one comes along—use your team.”
The interdisciplinary team is absolutely central to the delivery of palliative care where each dimension of the patient is addressed discipline by discipline. The medical team members provide the diagnosis, prognosis, and interventions to ease pain and other symptoms. The social worker provides psychosocial care ranging from helping a patient find affordable in-home caregiving, to facilitating resolution of a long-standing family conflict, to “just” listening while the patient shares their fears, hopes, or sorrows. The chaplain provides spiritual care including everything from offering a prayer or religious ritual, to addressing a patient’s sources of suffering, to connecting a patient with their own sources of meaning, comfort, and hope. All together, each discipline contributing their part provides care for the whole person.
But is this truly whole person care? While each individual member of the palliative care team may be able to provide parts of the “palette of care,”[1] patients rarely present in their component parts. Instead, during a pain and symptom follow-up visit, a patient tells the palliative care physician that she was physically abused by her caregiver. The chaplain or social worker visits a patient for an initial assessment only to find that the patient has developed severe dyspnea. How to respond? A high functioning palliative care team will train and empower each team member to be a specialist in their discipline and generalist in the bio-psychosocial-spiritual care of human persons living with serious illness. However, for reasons well beyond the scope of this article, this specialist-generalist model of team functioning seems to be most challenged when addressing the overlap between the medical and spiritual aspects of care. To illustrate, consider just a few of these cross-discipline patient statements:
“Doctor, I know you told me to take the pain medicine, but my soul is being purified to meet God by the pain I am enduring.”
A patient and retired priest to the nurse: “I want all the treatments you can possibly give me, I don’t believe in God anymore, I believe in science.”
Are these statements expressing medical issues, spiritual issues or both? And, if both, might statements like the above be pointing to a deeper tension intrinsic to the challenge of providing whole person care?
In the book Whole Person Care: A New Paradigm for the 21st Century, edited by Tom Hutchinson, Dr. Hutchinson states that palliative care clinicians have “two jobs that need to be carried out simultaneously: curing is an activity carried out by a healthcare practitioner to eradicate disease or fix a problem; healing is a process leading to a greater sense of integrity and wholeness in response to an injury or disease that occurs within the patient, which can be facilitated by the healthcare practitioner. And the difficulty is that the roles of both the patient and the healthcare practitioner in curing versus healing are not just different, they are diametrically opposed.”[2]
A second look at the patient statements above illustrates a similar tension. The patient forgoing pain medication and “enduring” her pain so that her soul will be made ready to meet God is prioritizing her healing over a cure for her physical pain. The retired priest is expressing his hope for a cure, possibly after becoming disillusioned with God in the absence of healing from illness. Holding this tension between curing and healing is the essence of whole person care. Reframed in this way, the role of the whole person care provider is to facilitate a shift away from disintegration, disconnection, and suffering whether expressed as physical, mental, emotional, spiritual, or relational distress, and toward a sense of integration, wholeness, and well-being.
It is often said as a scalpel is to a surgeon, so the goals of care conversation is to the palliative care clinician. As it has been well documented, an expertly facilitated patient or family meeting can reduce unwanted medical care and increase the chances that a person will receive care that aligns with their values, goals, and preferences, among many other benefits. Expertly crafted tools such as Ariadne Lab’s Serious Illness Conversation Guide[3] and Weissman’s et al. steps for conducting a family meeting,[4] outline the necessary elements of an effective goals of care conversation. These include opening introductions, exploration of the patient/family’s understanding, sharing diagnostic and prognostic information, addressing patient emotions, discussing options for care, and then translating the entire discussion into an agreed upon plan of care. However, considering the patient statements above, it is not immediately apparent how a conversation guided by these steps might open the way for healing, or even more, how they might “prepare and hold the space where the miraculous may happen.”[5]
Seeking to address this gap and hold the tension between the dual obligations to cure when possible and heal always, the Supportive Care Coalition with palliative care physician Dr. Woodruff English created and piloted a goals of care conversation protocol. The protocol was designed to open the way for existential, spiritual, and psychosocial sources of patient and family suffering to emerge, be expressed, and addressed. For the sake of comparison, Weissman’s 10-step and the 10-stage models are outlined below:
At first glance, much of the two models appear to be the same. They both emphasize that first impressions matter. Careful planning of the initial patient/family meeting along with attention to important details such as introductions to establish rapport make a difference in the quality of what comes next. They both emphasize the importance of good communication. Sharing diagnostic and prognostic information in non-technical language is as essential as arriving at an agreed upon plan of care. Yet, in the midst of these and other similarities, there are several key differences:
- Stages instead of steps: The “10-stage” instead of “10-step” designation is intended to evoke the image of acts in a play, movements in a dance, or scenes in an improv routine. While steps tend to occur in a prescribed order, stages will occur as the team follows the lead of the patient and family. Some of the stages, such as the briefing/spiritual grounding, introductions, and debriefing/documenting, will happen at the opening and closing of the encounter, while the order of the remaining stages is determined by what arises as the team listens deeply to the spoken and unspoken communications of the patient and family.
- Briefing and intentional spiritual grounding: The 10-stage model assumes that multiple members of a palliative care team will not only be present at the family meeting but also that the team will gather for their own pre-meeting. During this time they will share relevant clinical information and engage in some form of centering or grounding practice. The model does not dictate what this grounding practice might look like, but instead suggests that the team find practices that assist them in setting aside their own non-relevant concerns or personal agendas so that they might be more fully present to the patient and family. Possible grounding practices can include pausing together for several moments of silence, reading a short poem aloud, or sharing a brief period of mindfulness meditation.
- Introductions/build relationships: In addition to sharing names and their relationship to the patient, at appropriate moments during the conversations, meeting participants are invited to enter into deeper conversation through questions such as:
- “What do we need to know about you/your loved one to give you the best care possible?”[6]
- “Can you tell me about (patient), what kind of person is he/she?”
- “Where are you finding strength to get through this?”
- “What are you hoping for?”
- “Given all that is happening, what is most important right now?”
- Be present for lamentation and suffering: The discussion of the patient’s diagnosis and prognosis can precipitate profound spiritual and emotional distress. Rather than attempt to dismiss, brush past, offer platitudes expressions of suffering, this conversation model encourages the palliative care team members to simply be compassionately present, grounded, attentive, and aware. Suffering, unlike physical pain, is often best honored with attuned silence, straightforward validation, and empathic acknowledgement. Pausing the conversation to recognize and name the suffering is much more important than trying to bypass or fix it.
- Express gratitude: While this may be the palliative care team’s fourth or fifth family meeting of the day, this is likely the first time the patient/family have spoken to medical professionals in this way. Expressing genuine gratitude for the patient/family’s willingness to participate, be open, and candid is an important way to acknowledge the courage and vulnerability shown during the conversation.
- Debrief and document: Each family meeting is an opportunity for the team to increase their skill level through a regular practice of giving and receiving feedback. Additionally, in this model, each family meeting is an opportunity to foster greater team member self-reflection and self-awareness by briefly exploring their thoughts, feelings, reactions, and behaviors in a post-family meeting debrief. During the debrief the team regularly asks and answers questions such as:
- What did we learn about the patient/family?
- How did we feel the meeting went?
- What did we learn about ourselves, as individuals, and as a team?
- How satisfied are we that as a team we listened intently for the patient/family’s spiritual concerns, beliefs, and values and integrated these into the discussion?
Over the span of three years, this 10-stage model was piloted with 20 palliative care teams from hospitals across the US. All of the teams were trained to use the model and record self-evaluation data on their effectiveness in integrating these new behaviors and principles into goals of care conversations. Participants consistently reported greater attunement to patient/family suffering, increased confidence in exploring patient and family existential and spiritual issues, and increased commitment to team self-care activities such as pre-meeting spiritual grounding and post-meeting debriefing.
As providers of whole person care, palliative care team members are uniquely positioned to attend to the physical, mental, emotional, spiritual, and relational aspects of human persons, as well facilitate healing when a cure is not possible. This opportunity may be lost when the most important palliative care intervention, the family meeting, is approached from a “tick off the list” point of view. Pain and symptoms discussed? Check. Diagnosis and prognosis? Check. Psychosocial and Spiritual concerns? Check. Instead, this 10-stage model invites palliative care practitioners to approach the family meeting as an “I-Thou” encounter,[7] as a liminal or safe space where the “shy soul”[8] can appear. It is in this approach that the team becomes like an alchemist’s vessel[9] – a vas bene clausum — a container for the patient/family’s suffering, fears, and longings, and a place where healing can happen. If you are interested in learning more about the work of the Supportive Care Coalition and our spirituality toolkit, please visit our website: https://www.supportivecarecoalition.org
References:
[1] See Akron Children’s Pediatric Palliative Care website for background on this very apropos nickname for the palliative care team. https://www.akronchildrens.org/cms/sharing_blog/53994c22a59bb57c/index.html
[2] Hutchinson TA. Whole person care. In Hutchinson TA, ed. Whole person care: a new paradigm for the 21st century. New York: Springer; 2011:4.
[3] https://www.ariadnelabs.org/areas-of-work/serious-illness-care/resources/#Downloads& Tools
[4] See Fast Facts 222-227 at https://www.mypcnow.org/fast-facts
[5] Kearney, M. Educating the wounded healer. In A place of healing: working with nature & soul at the end of life. New Orleans: Spring Journal; 2009:186.
[6] Chochinov, HM, et al. The patient dignity inventory: a novel way of measuring dignity-related distress in palliative care. Journal of Pain and Symptom Management. 2008;36(6):559-571.
[7] Buber M. I and thou. New York: Scribner; 1970.
[8] Palmer P. A hidden wholeness: the journey toward an undivided life. San Francisco: Jossey Bass; 2004.
[9] Kearney M. The containment of care. In A place of healing: working with nature & soul at the end of life. New Orleans: Spring Journal; 2009.
