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Responses to "The end of life as we know it" (See article below responses)
Thank you for opening a discussion and inviting feedback on chaplaincy in pediatric palliative care. I am the chaplain at a small, specialized (referral-based) children's hospital, and the majority of my work is with our Transitional Care Unit (TCU) where we offer long-term care for medically fragile children (it's like a nursing home for children).
Almost all of our TCU children are wheelchair and g-tube dependent; some are trach dependent and a few even vent dependent. Diagnoses include CP, seizure disorder, anoxic or other brain injuries, profound cognitive and developmental delays and/or MR, and chromosome deletion. Some of these kids were born with their disabilities, others were hit with them either during the birth process or later during their childhood. Our TCU staff provide different types of care, depending upon each child's needs and status: rehabilitative, palliative, and end-of-life. I have drawn similar conclusions as Dr. Berlinger - (1) that the families of these children have entered into the realm of life that they neither wanted nor expected; "the end of life as they know it." And (2) that these families simply want some normalcy in their lives, to help alleviate the chaos and relentlessness of having a child with life-limiting (and often life-threatening) disabilities. Therefore, a HUGE part of my job focuses on hospitality - caring for the families with the same intensity and compassion that their children are cared for on the TCU; providing lots of events and activities at the hospital for the TCU kids' families to come and visit and participate in (family centered care!); frequent telephone calls and letters and cards to make them feel remembered, welcomed, and loved; and publishing a TCU newsletter every other month to indicate the high quality of life that the TCU children enjoy.
In the area of palliative care in particular, I have assumed a leadership role on increasing the awareness and knowledge of pediatric palliative care among the TCU staff and families. Our Palliative Care Team is in the process of formalizing pediatric palliative care guidelines (flow-charts) for situations such as respiratory distress, agitation, fever, anuria, and others; and we have recently put together a protocol for conducting palliative care rounds. It is a constant learning process for the TCU staff and the families, and so we are always looking for additional learning and training opportunities as well as ways to operationalize the principles of palliative care. As a chaplain, and as the lead on this palliative care effort, I am the one who has to keep on our radar screen discussions about code status, about what the parents wishes are for their child, and about end-of-life care (which is palliative care's scary neighbor). Our goal in the life of each TCU resident is to make every day as good as it can be and to make good memories. Our goal at the end of each TCU child's life (should we be privileged enough to find ourselves in that holy space) is to assure a 'good death' - comfortable, pain-free, anticipated (i.e. prepared for), and peaceful.
As chaplain, my role for families whose children are receiving palliative and end-of-life care is to assure them in word and deed that the family is not alone in the "end of life as they know it;" that their child is celebrated every day they are here and even after they are gone; and that we are blessed to have these children and our families in our lives and under our care.
Rev. Dr. Cathie Stivers
Children’s Hospital
Richmond, VA
I am the peds chaplain at Legacy Emanuel Children's Hospital in Portland, OR. I serve on the Pathways Steering Committee for our emerging Palliative Care program. Chaplain, social worker, Childlife and physicians constitute our group. We have two physicians and an RN with years of palliative care expertise. Our focus is children with serious life-limiting conditions, enabling us to get involved earlier than if we were only palliative care. The director of palliative care and hospice chairs our team, but is not herself a pediatrician. For years we have had an ad hoc group called Compassionate Care and this group has morphed to be a larger work group for Pathways.
Rev. Merv Friberg
Legacy Emanual Children's Hospital
Portland, OR
“The end of life as we know it”: chaplaincy in pediatric palliative care
The title of this column came from the CEO of a children’s hospital, who, according to a colleague, was interested in the potential of pediatric palliative care to provide “end of life as we know it care for families.” This observation – or, perhaps, this wish – stuck with me for two reasons. It reminds us that most health care professionals still associate palliative care with end of life care in the hospital – “upstream hospice” – and that palliative care professionals still have work to do to educate their clinical and administrative colleagues about what palliative care offers to patients who are seriously ill but may not be near the end of life.
And this observation points out what’s different about palliative care in the pediatric context: we can presume that there is an entire family who has received a catastrophic blow. This can certainly happen when the patient is an adult, too, but a diagnosis of potentially life-threatening illness in a child hits a family differently, harder. We can think about this in terms of theodicy – the problem of unmerited suffering – or in terms of ages and stages: the situation of a seriously ill 90-year-old who had a chance to live as a healthy nine-year-old is different from that of a seriously ill nine-year-old. The family of the 90-year-old is not surprised (or should not be surprised) by serious illness at this stage of life; the family of the nine-year-old is shocked. And the family of the seriously ill nine-year-old may include other young children who also need their parents, right now.
In recent conversations with other clinicians who work with sick children and their families, I’ve also learned that the culture of pediatric care may give families certain cues on how to present themselves. As one of these clinicians put it, families of sick kids try to make themselves into happy families, even if they weren’t happy before the diagnosis. In regrouping the family around the needs of the sick child, they may try to bury their tensions. But the new tensions of caregiving may cause the latent tensions to break out: parents who were on the verge of splitting up may resent the sick child who is forcing them to stay together. These clinicians note that these simmering tensions are present when the patient is an adult, too, but the cues that those families get are different: members of the health care team may talk more frankly about the burden of caregiving when the patient is elderly than when the patient is very young, or about the impact of illness on a patient’s own relationship.
What does this have to do with chaplaincy? Pediatric palliative care, like chaplaincy, is an emerging discipline in health care. Children’s hospitals may not yet have palliative care programs, in part because of the association of palliative care with end of life care. Clinicians may be unsure about how to talk to parents about palliative care, or about when to call for a consult. In December 2008, California joined two other states, Colorado and Florida, that have secured federal waivers from the Medicare hospice benefit for pediatric palliative care without requiring a determination of hospice eligibility. These initiatives recognize the immense difficulty parents may have in ending therapeutic treatment, and the special challenges of prognosis in children with life-threatening diseases. Educational efforts such as the Initiative on Pediatric Palliative Care (IPPC) are developing curricula for clinicians and identifying ways to improve palliative care for children and their families.
Chaplains are accustomed to working with families in “end of life as we know it” situations. Whether or not they work members of palliative teams, or in institutions with palliative care programs, chaplains have an affinity for palliative care. And some chaplains are helping to build the discipline of pediatric palliative care. In future columns, I’ll write about a new project I’m involved in that seeks to understand the particular role of the chaplain in pediatric palliative care programs. For the present, because this is an interactive column, I invite your thoughts and experiences on the present and future of pediatric palliative care.
The website of the Center to Advance Palliative Care (CAPC) includes a section on pediatric palliative care, with links on research, education/training, and policy:
http://www.capc.org/palliative-care-across-the-continuum/pediatric-palliative-care/
Nancy Berlinger is Deputy Director and Research Scholar at The Hastings Center, an independent, nonprofit, nonpartisan bioethics research institute located in Garrison, New York.
Her research interests focus on clinical ethics and include end of life care; ethics in health care chaplaincy; ethics in cancer care; conscientious objection and moral distress in health care; patient safety and the resolution of medical harm; and ethics education for pandemic planners. Broader interests include narrative ethics and medical humanities.
Currently, she directs a research project that is revising the influential Hastings Center guidelines on end of life care. This project is funded by the Patrick and Catherine Weldon Donaghue Medical Research Foundation and the Albert Sussman Charitable Remainder Annuity Trust. She recently completed a research project, funded by the Arthur Vining Davis Foundations, which examined how professional chaplains define “quality” within their own practice and profession, and how these definitions correspond to how chaplaincy is represented in the health care “QI” movement and in efforts to advance patient-centered care.
As Deputy Director, she manages the Center’s organizational capacity-building initiative, Bioethics and the Public Interest, which has received major support from the Ford Foundation.
Berlinger is the author of After Harm: Medical Error and the Ethics of Forgiveness
(Johns Hopkins, 2005, paperback 2007) and is currently developing a book project on cancer “survivorship” and the future of cancer care.
She serves on the ethics research group of the Joint Commission; the ethics faculty of the American Society of Healthcare Risk Managers (ASHRM); the bioethics committees at Montefiore Medical Center, Bronx, New York and at Richmond of New York, a longterm care facility; and the editorial board of Medical Ethics Advisor
. She teaches health care ethics at the Yale School of Nursing, and is a frequent presenter at grand rounds and other ethics education programs for health care professionals. She volunteers on the Chaplaincy Service at Memorial Sloan-Kettering Cancer Center in New York City.
She is a graduate of Smith College and holds the Ph.D. in English Literature from the University of Glasgow and the M.Div. in Christian Ethics from Union Theological Seminary.
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