Review by Jason Briggs, MFTI
This review is of our recent training "Death and Dying: Facilitating the Transition", which was presented by Michael Stephens, Sutter Home Health Bereavement Project Coordinator, on February 16, 2014.
Death and Dying: Facilitating the Transition
Presenter: Michael Stephens, Sutter Home Health Bereavement Project Coordinator
Presenter Michael Stephens discussed the invaluable service and support offered by Sutter Home Health Bereavement Project's multidisciplinary team, which offers many forms of support, for person's and their caregivers who are facing death and dying issues. All information provided in this missive, is from his presentation to our Sierra Foothills CAMFT Chapter on February 16, 2014.
The Sutter multidisciplinary team consists of Social Workers, Marriage and Family Therapist's, Certified Massage Therapist's and many other support and administrative staff. Sutter's Home Health Bereavement Project's services provide a systemic approach, for patients and families and/or any other person(s) that has a meaningful relationship within the support system of the dying. Sutter assists with the legal and administrative aspects of their client systems as well, assisting them with their legal, financial and other administrative tasks to be completed. As clinicians, understanding Sutter's palliative care approach, can help us provide our clients with this excellent resource and providing informed consent about choices they have for healing, while supporting themselves and their loved ones find meaning in an often very vulnerable and loss focused time.
Modeling openness about these options may help us bond with our clients, assuming it is done a the right time, for the right reason, in the right amount and with the right persons and done with empathy. Death and dying bring loss to the forefront, in all areas of life: bio, psycho and social and what better way to provide our clients with adjunct support than to inform them that all Sutter's Bereavement services are free to the general public! Sutter also provides respite care for caregivers and support groups as well, which may be an invaluable resource for those needing bereavement and/or respite support around their death and dying issues and to cultivate connections, in the face of a death negative society that promotes isolation.
The field of hospice/palliative care is changing due to socio-politcal-economic factors embedded within a broken and antiquated U.S. Health care system. wherein For-Profit organizations are owning the larger funded contracts, thus more families can garner support, but typically only with a very brief term of care. About 50% of those seeking hospice support begin palliative care a week and more often within a few days of death; as hospice used to typically start about 6 months prior to death. It was also emphasized that as clinicians we must be willing to step in a role of educators, helping our clients understand the myths around hospice and remind them that hospice doesn't equal death.; informing our clients it is common for people to use hospice for a period of time, such as for respite care, palliative care for pain management and/or addressing sustained enervation, and then to make an informed choice to get off hospice/palliative care so they can reinstate curative measures (such as surgeries, radiation, etc).
The overarching goal of bereavement care providers is to help those facing death and dying issues, to understand and identify any movement that is meaningful. Movement can be around pain management and addressing both physical and psychosocial factors that contribute to its cessation. Movement may be purely a shift in perception, arriving at a conclusion that we all are doing the best we can, within the context of end of life issues and the health care system that supports our clients and their families (this was brought up in the health care system context, wherein M.D.'s and Social Workers are observed often not mentioning hospice to those facing end of life issues, as they are predisposed to see only curative measures). So, again our discussion as clinicians is making sure clients have informed consent and that they aren't consenting to a support that doesn't present all the information available to them. Clients can have access to palliative options for support with their end of life or grief/loss support needs, so we may need help here, identifying appropriate ways to educate client systems that the hospice/palliative care approach, can be used within the greater context of curative care. Curative care (surgery and medicine) is obviously the dominant U.S. approach for addressing health issues and end of life pain management, so timing a respectful dialog and a both/and way of thinking is required by the clinician, while exploring options about the role and timing of palliative care.
Assuming a client is curious about the theoretical assumptions that drive Sutter's palliative care approach, Michael describes it be primarily informed by Existentialism and Humanism. These orientations were portrayed as being a good fit with other support models and as necessarily integrative, in so far as the approach used is collaborative and client focused, within the relationships identified as meaningful to the person dying. Support persons can consist of a spouse, children, parent(s), friend(s), person(s) of support within the clients work environment and/or anyone else the person dying identifies they have a meaningful relationship with.
Both the person(s) dying and survivors can be helped to find meaning throughout the dying process and after death. When death approaches and finally occurs, a focus on the exploration of the concept and experience of loss is viewed as the cornerstone issues, typically underlying most amvalence, so normalizing grief reactions or those unable to grieve is essential. Michael states, “80% of people are in avoidance of the confrontation of loss...” Loss can be related to both persons and/or objects and symbolic loss. The latter occurs in relation to concepts of self, embedded in constructs and institutions such as, faith, trust, religion, sin, responsibility to others versus self , activity levels, work and service oriented worldviews and so on. Other meaningful and highly symbolic attachments discussed were to guilt, any form of responsibility, attachment to their loved ones or guilt they have about not ever attaching to someone (alive or dead) that they feel guilty about not every feeling connected or attached to. It was emphasized to take time with pacing acknowledging gains, with supporting a client or their family with the anger or fear around losses for as long as they find it helpful.
Typically, losses must be explored and supported, before gains can be identified and understood. Gains often cannot be seen, until the many faces loss have been identified and understood as normal grief response, often accompanied by layers of guilt. Here a particular double bind was discussed as common for clients to admit they have set up: If I have a wish this dying process was over (because it is painful for all of us), that must mean I don't care that my loved one is dying. Then they feel that if I don't care that my loved one is dying, then I am guilty of (fill in the negative belief/cognition here). Pointing this dynamic out can be helped by normalizing the stuck place, and the wish for both realities can be true: wanting relief from the painful process (support role, grief, loss, own mortality, etc (current or anticipated) and having a supporting stance toward their loved one; helping them see both can be true, rather than one or the other only.
Challenges to clients (and clinicians) in death negative society, are possessing authenticity while facing end of life issues. Authenticity was defined as the understanding and appreciation of the experience of ones complete relationship to life: seeking to balance our physical, mental, emotional and spiritual (or humanistic values) selves and honestly addressing barriers set up to the experience of these selves. Authenticity isn't engendered in U.S. Society, due to its focus on a culture of youth, materialism, wealth and appearances; in short we are disposable/throw away society. Said in another way, U.S. Society values form (youth culture, sex culture, wealth, status, etc) over content (valuing connection with self and others, cultivating mores that seek to understand anothers experience rather than condemn, accepting integrity, honoring right relations and humility, identifying and accepting ones purpose and meaning in life, cultivation of knowledge of spiritual or humanistic values, respecting self and others, service mindedness, balancing ones physical, mental, emotional and spiritual or humanistic valued selves, etc).
Families facing these embedded societal messages have children that are facing their own grieving process too, many of whom are seeking some way to connect to and find meaning in death and supporting the dying and cultivating a the attitude that death is a part of life. Many clinicians in our group reported they felt their younger clients were helped with play and sand tray therapy and included discussion of creative ways to include the family of the dying person in therapy and to help expand constricted and painful emotional stuckness. Ideas for support were: encouraging art therapy (in whatever form), for children and pre-teens and teens, some families are now choosing to have a “living wake,” which unites all those that care for and love those going through their dying process, by celebrating life while life is still being lived. The ritual of a living wake, was described as including multiple generations to connect with each other, honoring and discussing feelings, through shared artwork, memories and reaching out to one another during their time of need for connection and meaning; an opening to, rather than closing to, death. A living wake is one way to promote the attitude 'death is a part of life' and undo the isolation that can stem from internalized messages from a death negative society.
In their selfsame way, Sutter, with their focus on using Humanistic values, encourages its employees to help meet the families they serve, where they are at. This support stance, encourages the perspective that their families will find healing, as it exists along a continuum, related to their own values, mores, ideals and level of openness to the complexity involved in end of life issues. Some may need to have their guilt normalized, while others their guilt may need to be owned, as it may be disowned. Some may need to learn to give their grief expression, as to help them see they didn't want to face their feelings of loss. Some may need to know that it is common to have present loss of short term memory, due to unprocessed grief or grief they may be anticipating. When supporting clients learning to open to death and dying, advice isn't welcome, as advice giving is already commonly prevalent in their family and/or support system. Instead, empowerment is encouraged, through restraint of advice and extending trust in the clients capacities, linked with an active participation, in helping clients identify some movement in the finality, some gain in the loss, some openness as death closes in and some flicker of light in what may be a very darkened period of life; In short, validate and hear their pain, attune to it and them and let it and them into your heart.
Defended positions of ambivalence are understandable when confronted with death and dying issues, both by clinicians and those we serve. Respecting defenses is a great starting point with our clients, finding a way to soften and support, to connect and empathize, while recognizing their strengths. It may be that clients are openly connected to their strengths, but need support in using them to address their grief (acknowledging movement). As clinicians we are being asked to have dual vision, which trusts they have all the inner resources they need to heal, while recognizing their life's issues and helping them find meaning in their experiences, based on their strengths.
Empathy helps equalize the relationships they seem so out of balance and creates an intimate space that people facing end of life issues are wanting permission to experience, especially with their loved ones. For many, not just seeking, but finding meaning during this important aspect of life, we call death, will be enough. Part of our work may be to help families get connected to needed healthcare directives and other end of life needs paperwork, while the dying person is still lucid, which can do much to help movement continue, when so much seems to be stopping.
Sutter is also a valuable resource for providing free paperwork that will be useful in minimizing distractions when facing end of life issues. For example, putting into order ones will, funeral arrangements, PULSE (Physicians Orders for Life Sustaining Treatment (augments the Advanced Medical Directive)) and many others end of life documents, can free up the death and dying process to unfold with less distractions from doing the deeper work of finishing “the business” of ones life.
In closing, I would like to leave you with a snippet from a book that was brought up as a resource for clinicians and clients and their families about cultivating mercy toward ourselves and others in the face of loss. I feel it is a nice summation of Michael's presentation to our community of clinicians:
“We have run away from most of our pain for so long that we now have no idea how to deal with it. But when we allow the heart to stay open to the emotional unfolding, instead of the mind closing around it, we are less afflicted by the not unexpected occasional reappearance of such feelings. We begin to experience a healing that breaks our habitual withdraw from pain and from life itself...Life sings again and again, that peace comes from mercy and violence from isolation, and that the more we are able to receive our pain with kindness, the more likely we are to offer theses conditions to another. Making peace with our common grief, we stop the war.
~Unattended Sorrow, Steven Levine
**Books and media resources shared at this workshop are as follows: A Year to Live, Who Dies? An Investigation of Conscious Living and Conscious Dying and Unattended Sorrow: Recovering from Loss and Reviving the Heart, A Gradual Awakening; each by Stephen Levine, Past Director of the Hanuman Foundation's, Dying Project (Some books were co-authored with Ondrea Levine).
~ Special thanks to Michael Stephens whose skill, compassion and sage approach to death and dying was naturally and clearly expressed, heartfelt and will surely help us all be more attuned to those we serve facing end of life issues, with appropriate clinical support, that is understanding, compassionate, skillful and empowering.
For those in need of Sutter Bereavement resources/support, load this URL:
~Jason Briggs, MFTI
Merrill Powers, Inc.
Thank you Jason for this wonderful review!
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