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by Christine Bridges

“I don’t think I could stand to be around that much death. All that sadness!” When I announced my career change and plan for a Hospice and Palliative Medicine (HPM) fellowship the reaction of most, in healthcare or not, was concern for my emotional wellbeing. Internally my initial response was: 1. Why do people think that death is reserved for HPM alone? and 2. Death and grief are all around, they are a part of life.

Perhaps it is my current vocation, but it seems that modern media agrees. Death and grief are showing up in unexpected formats. Most recently the new ‘dramedy’ on Showtime, ‘Kidding,’ starring a shockingly sedate Jim Carrey. In the pilot episode, we see our central character Mr. Pickles, a pseudo- Mr. Rogers, waiting to be interviewed on Conan Obrien’s talk show. We learn quickly that this famous man recently lost his son. The episode draws us into his life and the way his son’s death has ricocheted through his family. We see him turn to his work to cope with his grief. Mr. Pickles is planning a show where he will openly address his son’s death. Quickly the old anthems come, “People don’t want to hear about death.”



I imagine myself and my HPM colleagues nearly jumping from our chairs, arms waving, “But people do want to talk about death, they do!” We have learned this the hard way, stepping into complex family meetings and hearing that no one has talked about death or the dying process. Now at the very last inescapable moment, there it is, death on the doorstep. 10 years ago Holly Prigerson's research group published a study showing that earlier discussions around end-of-life care lead to lower rates of caregiver depression. When patients and families are surveyed about preferences regarding the outcomes they are seeking for the end of life they list ‘knowing a doctor is comfortable talking about the end of life,’ and ‘clear decision making, preparation for death.’ A decade later the average length of stay in hospice remains a minuscule 2 weeks. Fourteen days is a tiny window to get to know a patient, their family, their goals, and manage their most difficult symptoms. With that small time to prepare, families are confronted with death more suddenly than they expect.

This was the most commonly repeated experience in a recent spousal-loss support group that I attended. So many of the remarkable people who filled that room echoed each other’s frustrations that the medical community had not told or prepared them for death. At the end of life their own doctor seemed to indicate this outcome had been inevitable. The doctor knew Ms. Jones or Mr. Smith was dying, but the patient and family did not. The spouses mentioned the legal and practical concerns of managing shared assets, but they also mentioned the missed chance for one last vacation, or one last day at home together. Doctors can talk about death, or we can avoid the topic Death comes anyway, and it leaves grief behind as its last gift.

I have a slightly unique perspective, losing my father unexpectedly when I was 20 years old. The other day in lecture the organ and tissue donation organization shared about their work in our community. They showed a picture of the medal they give donor families. That same medal sits next to our brown leather family Bible because my father was also a tissue donor. I felt lost, for just a few breaths and it becomes clear that my work of grief may never be done. Even though we are healers, we as medical providers have all experienced loss. How does our past loss affect our future work? How do we carry our personal and professional losses with us and allow them to be transformed into healing? The opportunity exists for us to help our patients and family begin their journey with grief together, to start that difficult journey through grief hand in hand.

Mr. Pickles compares grief to losing an object that you can never find again. He sings about feelings, letting us know that there are no right or wrong emotions. He argues with producers who do not think children can handle talking about death as if children do not grieve. Perhaps parents, much like providers, can feel out of control, torn free of their moorings when the discussion turns to death. Just like a parent, we must help with the transition from death to grief. There are no shortcuts in grief. We are all grieving something, loss of freedom, or youth, or expectation, and often, missing the people we have lost. We in healthcare cannot use our work as a tool to avoid grief, but like Mr. Pickles, use our losses as a way to do better and give back to those around us. Spending a moment in the shoes of those actively grieving is humbling. It is in service to the goals of patients and their loved ones that we must talk about death.

As physicians, we fear causing harm by sharing ‘bad news.’ The idea that we could prevent grief, to keep it at bay by refusing to allow its presence in the same room as our precious patient, may be a dangerous one. If we listen to our patients, listen to the wisdom even in a TV show, we hear the truth: our patients want to know, and their families need to know that death is imminent. It is not always the patient’s death or family’s grief that we dread. We must recognize our own fear of grief, our sense of failure, our frustrations at being left with uncertainty. We as the medical community must conquer the fear of our perceived enemy: death. As my father often said, “We all leave this world sick enough to die.” It is a simple truth that we are all mortal. It is a complex challenge to acknowledge this in the practice of modern medicine.

I look forward to taking the journey with Mr. Pickles and his family. I will try to make death an old friend, and grief a teacher.

Christine Bridges, MD is a hospice and palliative medicine fellow at the University of Louisville Health Science Center. She enjoys baking and watching zombie movies with her husband.

Wright AA et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008 Oct 8; 300(14): 1665–1673.

Steinhauser KE, Christakis NA. Preparing for the End of Life: Preferences of Patients, Families, Physicians, and Other Care Providers. Journal of Pain and Symptom Management. Volume 22, Issue 3, September 2001, Pages 727-737.

Steinhauser KE, Clipp EC. In Search of a Good Death: Observations of Patients, Families, and Providers. Annals of Internal Medicine. 132(10):825-832

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by Abigail Latimer (@abbie_lcsw)

The recent article about the orca carrying her dead calf sparked a flurry of media conversation about grief. [1] As the only palliative clinical social worker in an 800-bed hospital (and former bereavement counselor), I am frequently asked by clinicians to help when family is struggling with grief. Requests also come directly from family members seeking help talking to children and understanding their own grief. Regardless of the situation, the underlying desire is the same. Everyone wants to know the “right way” to grieve and ease suffering.

Some years ago, Elisabeth Kübler-Ross published her book on death and dying based on her work with terminally ill patients.[2] Despite the wealth of information presented, people mostly remember the stages of grief. And why not? Stages help us to think of grief as a nice and tidy, forward moving process. It is comforting to think that this stage will be over and the next one will take place, hoping the “end” of this hurt will come soon. The book cautioned us that grief is not actual stages and that point has been emphasized since then.[3] Yet, the belief persists that following a death we will go through denial, anger, bargaining, depression, and acceptance, and hopefully in that order. Unfortunately, this assumption can be harmful.[4] So if grief doesn’t come in stages, what does it look like? To quote the youth of today, a “hot mess”.

It’s worth mentioning the clinical difference between “normal” and complicated grief. Complicated grief is also called: unresolved grief, traumatic grief, pathological grief, prolonged intensified grief, and abnormal bereavement.[5] About one out of ten bereaved adults will experience prolonged grief disorder.[6] In fact, the DSM-5 included “Persistent Complex Bereavement Disorder” in its proposed criteria for conditions for further study (p.789)[7]. Palliative clinicians should be trained to recognize risk factors and symptoms of complicated grief in order to not over-pathologize normal grief responses.[8][9] Although the effectiveness of preventative interventions is debated, there is some evidence symptom severity can be lessened in the short and long-term.[10] (This article will not begin to address the complexities presented in suicidal, homicidal, child or antepartum, perinatal, or postpartum bereavement.)



For most adults who experience the death of a loved one, they will move through normal grief reactions without any pathology.[11] What I try to reframe are the expectations we have regarding what’s “appropriate coping”. Sometimes I get called to a family because the patient or family is crying too much; other times it’s because they aren’t crying at all. What I want everyone to know is either response is acceptable. Grief can cause you to withdraw from people and activities, sleep too much or not enough, feel empty, guilty, depressed, and/or lost.[12] Even anticipatory grief (grief occurring before death) has been linked with these symptoms as well as worsened problem solving skills.[13] Contrary to stage theories, these symptoms can occur all at once or in loops. The low part of the loop can be intense negative feelings and then gradually lessen over time. Soon after loss or right before, these loops can be very low, occur frequently, and last for a long time. We hope as time goes on, the upswings lengthen and last longer as those intense painful feelings lessen. It can be confusing for the grieving because just when they think they’re getting better…down goes another loop. Although distressing, these feelings are all very natural and normal and it’s absurd to suggest there is some “right way” to endure it.

As hospice and palliative care providers, the goal is to alleviate suffering; but often with grief, some suffering is inevitable. Ongoing grief work is often treated by a balance between avoiding and confronting loss through various activities and tasks.[14] Mental health professionals can employ a variety of interventions through cognitive behavioral therapy, family focused, and meaning making approaches.[15] Although the treatment for normal grief reactions is debated in efficacy, it hasn’t demonstrated any harm.[16],[17],[18] Nevertheless, an undisputed and effective treatment for both complicated and normal grief is time.

There is no stage or emotion that “should” be felt and there is no timeline. By means of radical acceptance, I encourage patients and their loved ones to acknowledge what is and sit with whatever feeling they’re experiencing. I advise them to stop “should-ing” themselves, as it only worsens the guilt. Sitting with this intensity of distress is hard for those suffering and for those witnessing the suffering. But like the orca reminds us, there are no quick or easy solutions to ease the pain and suffering caused by death.

Abbie Latimer, LCSW, ACHP-SW is the Palliative Care Clinical Social Worker with University of Kentucky HealthCare and is also a second year doctoral student with the University of Kentucky College of Social Work. When she's not studying, writing, working, or doing CrossFit, she's likely binge watching old episodes of Breaking Bad and the Office. You can find here on Twitter at @abbie_lcsw. 

For more Pallimed articles on grief and bereavement, click here. For more articles from Abbie Latimer, click here. For more articles from social workers, click here.
References:
[1] Raphelson, S. (2018, July 31). Grieving mother orca carries dead calf for more than a week, over hundreds of miles.
[2] Kübler-Ross, E. (1969). On death and dying. New York, NY: Macmillan.
[3] Elisabeth Kübler Ross Foundation. (n.d.). Excerpt from Dr. Allan Kellehear’s foreward: “On death and dying”- 40th anniversary edition.
[4] Stroebe, M., Schut, H., Boerner, K. (2017). Cautioning health-care professionals: Bereaved persons are misguided through the stages of grief. OMEGA Journal of Death and Dying, 74(4), 455-473. Doi: 10.1177 0030222817691870
[5] Dodd, A., Guerin, S., Delaney, S., Dodd, P. (2017). Complicated grief: Knowledge, attitudes, skills and training of mental health professionals: A systematic review. Journal of Patient Education and Counseling, 100, 1447-1458.
[6] Lundorff, M., Holmgren, H., Zachariae, R., Farver-Vestergaard, I., O’Connor, M. (2017). Prevalence of prolonged grief disorder in adult bereavement: A systematic review and meta-analysis. Journal of Affective Disorders, 212, 138-149.
[7] American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington, VA: American Psychiatric Publishing
[8] Solomon, C. G., Shear, M. K. (2015). Complicated grief. The New England Journal of Medicine, 372(2), 153-160
[9] Nielsen, M.K, Neergaard, M.A, Jensen, A.B, Vedsted, P., Bro, F., Guldin, Mai-Britt. (2017). Predictors of complicated grief and depression in bereaved caregivers: A nationwide prospective cohort study. Journal of Pain and Symptom Management, 53(3), 540-550.
[10] Wittouck, C., Van Autreve, S., De Jaegere, E., Portzky, G., van Heeringen, K. (2011). The prevention and treatment of complicated grief: A meta-analysis. Clinical Psychology Review, 31, 69-78.
[11] Jordan, A., Litz, B. (2014). Prolonged grief disorder: Diagnostic, assessment, and treatment considerations. Professional Psychology: Research and Practice, 45(3), 180-187.
[12] Clayton, P.J., Herjanic, M., Murphey, G.E., Woodruff, R Jr. (1974). Mourning and depression: Their similarities and differences. Journal of the Canadian Psychiatric Association, 19(3), 309-312.
[13] Glick, D., Motta, M., Wiegand, D., et al. (2018). Anticipatory grief and impaired problem solving among surrogate decision makers of critically ill patients: A cross-sectional study. Journal of Intensive and Critical Care Nursing, https://doi.org/10.1016/j.iccn.2018.07.006
[14] Stroebe, M. and Schut, H. (1999). The dual process model of coping with bereavement: Rationale and description. Journal of Death Studies, 23(3), 197-224.
[15] Neimeyer, R. (2014). The changing face of grief: Contemporary directions in theory, research, and practice. [Special Issue]. Progress in Palliative Care, 22(3), 125-130.
[16] Larson, D. G., and Hoyt, W. T. (2007). What has become of grief counseling? An evaluation of the empirical foundations of the new pessimism. Professional Psychology: Research and Practice, 38(4), 347.
[17] Currier, J. M., Neimeyer, R. A., and Berman, J. S. (2008). The effectiveness of psychotherapeutic interventions for bereaved persons: a comprehensive quantitative review. Psychological Bulletin, 134(5), 648.
[18] Jordan, A. H., and Litz, B. T. (2014). Prolonged grief disorder: Diagnostic, assessment, and treatment considerations. Professional Psychology: Research and Practice, 45(3), 180.

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by Kristina Newport (@kbnewport)

In 2016, the palliative care community lost a dedicated advocate and compassionate caregiver when Eloise “Ellie” Coyne died. She was well-known to the Virginia Commonwealth University (VCU) Community where she held the position of Volunteer Coordinator but her colleagues knew the all different roles she played for patients and staff on the 11 bed unit: mother, advocate, healer, listener, comforter and mother. Of all the many things Ellie provided to her patients and colleagues, perhaps the most important was here complete acceptance of all people, with an uncanny ability to meet people exactly where they were and see value in each person.

Ellie regularly provided opportunities to create legacy through story telling, artwork, photos and mementos. It was rare for a patient to leave the Thomas Palliative Care unit without a pillow case of signatures or a plaster caste with a handprint. One of the legacy projects that now lives on in her absence has been lovingly named “Ellie’s Box”.

While Ellie was still living, she worked with Palliative Care RN Dawn Quinn to create small glass stones backed by pictures or words that are meaningful to patients and their family members. On the back of the pictures, families could have the fingerprint of their loved one done in archival ink. It was just another one of the ways this caring team helped families and loved ones to make a meaningful connect in they could carry with them. “This is so much about the importance of connection,” states Quinn. “When I see someone find the "perfect stone", I feel touched with privilege to help create a new way for them to remain connected to their loved one.”

Quinn recalls a time when a family was struggling with the timing of removing their loved on from life-prolonging artificial support. After they had the opportunity to choose stones that reflected their loved one and had her finger prints placed on them, it was as if the memento they received had ensured their connection would not be lost. The family held tightly to the stones in their hands and allowed extubation and a peaceful death to proceed.

At VCU, the stones are kept in boxes that families can look through and choose from, on the palliative care unit. The idea has spread, however, throughout the hospital, to the point that the palliative team tubes the stones throughout the hospital to other units where patients are in their last hours or days.

So now, families leave VCU with a memento and memory of their loved one, due in part to Ellie’s work and influence on the providers in that system. If it had been up to Ellie, all suffering patients and families would have a hand to hold, a comforting blanket and a memento to take home with them that can continue on. It is only fitting that Ellie’s Boxes be made and offered to people in other health systems as well. It is just the way Ellie would have wanted.

Kristina Newport, MD, FAAHPM, is a palliative medicine physician in Central pennsylvania who will soon join the Palliative Care team at Penn State Health as Section Chief and Assistant Professor in the College of Medicine. You can find her on Twitter at @kbnewport. You can read her other Pallimed posts here.

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by Vivian Lam

“Life changes fast.
Life changes in the instant.
You sit down to dinner and life as you know it ends. 
The question of self-pity.”

When does grief become “self-pity”? What is the “proper” way to grieve?

Joan Didion begins writing what would become The Year of Magical Thinking a few days after her husband, John Dunne, dies from a heart attack. Coupled with the mounting health crises of her daughter, Quintana, Didion’s world is thrown out of joint. In the ongoing aftermath of these tragedies, Didion, acclaimed novelist and literary journalist, copes by doing what she has done all her life—write. But this time, her husband is no longer the patient proofreader working beside her, but a ghostly absence she can’t stop turning back to. She tests the threshold where “normal” grief crosses into the “pathological,” picks apart medical and societal indifference towards the patient and the survivor, scrutinizes a vast scientific and literary trove on death and mourning. But in spite of her clinical self-awareness and the terse detachment of her reporting, she can’t break out of an irrational “magical thinking” that sends her down a spiral of uncertainty and regret.

What makes The Year of Magical Thinking a quintessential work in the bereavement canon is not just her analytical prowess, but the strength she finds in vulnerability. What results from her attempts to “come to terms” and “handle things” is an extended elegy to grief and change. In the waves of raw despair that belie how lost and isolated death has left her, Didion demonstrates a resilience that, though failing to triumph, offers illuminating insights on the experience of grief and the insufficiency of our traditional views towards the process of grieving.

We might even find it wrong to consider grief a process in the first place; for Didion, grief comes as a state of being.
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In an interview with New York Magazine, Didion states that one of the main reasons why she wrote this account was to “bring death close.” In direct opposition to the invisibility of death in Western society, Didion conducts a form of investigative reporting on grief—the primary case being herself. With repetitive and desperate precision, she reconstructs and deconstructs the moments leading up to her husband slumping onto the dinner table, and is frustrated by her cloudy memory of following the ambulance only to return home alone with a bag of bloodied clothes. She pores over the apartment doormen time log for the night of December 30, and wonders “Was that ever a heartbeat or was it just electricity” (81)? She jumps back and forth in time, placing all events relative to her husband’s death with an unshakable guilt and unanswerable “what if’s.”

Directly opposing her attempts to gather information and regain control of the situation, Didion is plagued by an “irrational” disengagement with reality. “Magical thinking” refers to a belief that an action or object can influence or change the outcome of an otherwise unrelated course of events. Some might call it “superstitious,” and others might call it “prayer.” For Didion, magical thinking comprises her illogical belief that her husband was “coming back,” and that she would yet be able to save him and “reverse the narrative” (35). She balks at the hospital’s request to donate his eyes and at her own reluctance to donate his shoes, for “[h]ow could he come back if they took his organs, how could he come back if he had no shoes" (41)? She links her resistance against putting her daughter on a trach by “the same fund of superstition” that “she could be fine in the morning, ready to eat, talk, go home” (125).

Compounding these frustrations is what she calls “the vortex effect” (107)—a kind of PTSD triggered by familiar details that send her time travelling back to when her daughter was three years old, to when she and her husband went to dinner at Morton’s every week. “I cannot count the days on which I found myself driving abruptly blinded by tears. The Santa Ana was back. The jacaranda was back” (107). She repeatedly berates herself for being so easily sideswiped by these memories, to not be able to even “get as far as Rite Aid” without being swept in another deluge of regret (121).

So does Didion note the difference between grief and mourning:

“Until now I had been able only to grieve…Grief was passive. Grief happened. Mourning, the act of dealing with grief, required attention. Until now there had been every urgent reason to obliterate any attention that might otherwise have been paid, banish the thought, bring fresh adrenaline to bear on the crisis of the day. I had passed an entire season during which the only words I allowed myself to truly hear were recorded: Wel-come to U-C–L-A.” (143).

She condenses grief into textual form, expressing a fragmentation of thought and experience of reality that exposes a vulnerability she struggles to come to terms with.
Facing these mounting crises, Didion falls back to what she “had been trained since childhood” to do: “read, learn, work it up, go to the literature. Information was control” (44). She references a robust range of sources on death and grief from history and sociology (e.g., Sherwin Nuland’s How We Die, Phillipe Aries’ Western Attitudes Towards Death), psychology (e.g., Freud’s “Mourning and Melancholia”), classic literature (e.g., CS Lewis’ A Grief Observed, Thomas Mann’s The Magic Mountain), poetry (e.g., Auden’s “Funeral Blues”), “professional literature” (e.g., the Harvard Child Bereavement Study, The Merck Manual), and a number of other medical papers. Emily Post’s 1922 book of etiquette, far from being outdated, resonated with her because she “wrote in a world in which mourning was still recognized, allowed and not hidden from view” (57). She was taken by its practicality, as opposed to vague prognostications of abnormality.

Of particular salience was John Murray’s Intensive Care: A Doctor’s Journal, from which she “learned much that proved useful in…[her] daily dealing with the ICU doctors…” (102). So does she know that she has “made headway when a doctor to whom you had made one or another suggested presented, a day later, the plan as his own” (103). For the duration of her daughter’s hospitalization and transfer, Didion expresses a distinct distrust and dissatisfaction with the medical professionals she dealt with. In one particular instance, she argues with a doctor on the day they decided to do a tracheostomy for her daughter. She questions their rationale (“The rule at Duke [for intubation period] was also a week,” “It’s already on schedule,” “Everyone on the neuro units got a trach”), balks at their assumption that the basis for her resistance was the scar (“They were doctors…I was not. Ergo, any concerns I had must be cosmetic, frivolous”), that she didn’t notice that her daughter was taken off the EEG (“Maybe I didn’t notice that? My only child? My unconscious child?”) (123-125). She criticizes the vaguely placating status reports of the medical personnel with a kind of incredulous, dark humor:
“...I was told by a physician's assistant that after his weekend absence he had come in that morning to find Quintana's condition 'encouraging.' I asked what exactly had encouraged him about her condition when he came in that morning. 'She was still alive,' the physician's assistant said” (66).

What does “encouraging” mean? Does “leaving the table” in uncertain condition imply improvement from “not sure at all she would leave the table”? The “gilded-boy story,” used as a memory and comprehension test, “seemed to represent, in its utter impenetrability and apparent disregard for the sensitivity of the patient, the entire situation with which [she] was faced” (105). The condescension and indifference she faces in her attempt to stay informed and participate in her daughter’s care, leads her to so deep an isolation that, in a symbolic assertion of her competence, “it did not immediately occur to [her] that for the mother of a patient to show up at the hospital wearing blue cotton scrubs could only be viewed as a suspicious violation of boundaries” (105).

It is not until she had read the autopsy report that she “[began] to believe what [she] had been repeatedly told: nothing [they] had done or not done had either caused or could have prevented his death” (206). This didn’t mean that she had finally “overcome” her grief, or could now walk without the chains of memory. She still continues to reverse time and get lost in a vortex of memories. But now, instead of “trying to substitute an alternate real” she was “trying to reconstruct the collision, the collapse of the dead star” (183). She, like other survivors, still continues to “look back and see omens” and continue “[l]iving by symbols” because of the nagging feeling that she has not “sufficiently appreciated” something (152). It is the tragedy of knowing that we do not have the power to confidently say “You’re safe. I’m here” (219).

What Didion comes to realize is the insufficiency of words to grant meaning to a senseless event. The safeguard of literature can never sufficiently prepare her for the experience of grief. Nor can the assurances of her doctors ever remedy the helplessness she faces with death. Writing cannot provide sufficient catharsis to erase the “look of extreme vulnerability, nakedness, [and] openness” that mark people who have lost someone, and “think themselves invisible” (74-75). She comes to realize that the words that haunt her (“And then—gone,” “You’re safe, I’m here,” “For once in your life just let it go”) form a kind of tragic poetry that cannot be analyzed. As Didion states, the difference between “grief as we imagine it and grief as it is” lies in “the unending absence that follows, the void, the very opposite of meaning, the relentless succession of moments during which we will confront the experience of meaninglessness itself” (189). Words cannot fill the void.

And yet, a year and three days after starting this account, she realizes that she does not want to finish it. “The craziness is receding but no clarity is taking its place. I look for resolution and find none” (224). We refuse to “[l]et them become the photograph on the table…the name on the trust accounts” and “keep them dead” (224). We are told to let go in hopes that the ghosts will stop haunting us, but to do this feels more like betrayal.
Didion does not come to a conclusion. She finds no positive affirmation or overarching meaning. We are left with an awareness of the “ordinary instants” that pass uneventfully in our lives as we wait for the world to suddenly shift beneath our feet. Grief shouldn’t have to become self-pity. In the isolation of the void, where we must undo old habits and swallow the mundane discoveries we save for one listening ear, we are left only with ourselves (195). But even in a world where the divide between life and death has been pushed offstage, who are we to banish grief simply because it reminds us of the finitude of our own ordinary days? We can still support each other in the face of that void—to simply “bake a ham,” “drop it by the house,” and “go to the funeral” in solidarity (61). We must open ourselves to grief, if only to remind ourselves that we are never alone.

What Didion has built is a testament to the fragility of our lives, and to our resilience to continue on. We continue to carry these ghosts with us, and we are transformed by keeping them close to our hearts. "Leis go brown, tectonic plates shift, deep currents move, islands vanish, rooms get forgotten” (227). Life changes in an instant. The world moves on.

But memory never has to fade.

For further reading:
-Blue Nights – What could be thought of as Didion’s sequel to The Year of Magical Thinking, recounting the death of her daughter, Quintana.
-The stage adaptation of The Year of Magical Thinking
-Interview with the “young writer” she refuses to talk to on page 168
-Interview with Katie Couric on the memoir and the grieving process

Vivian Lam is a student at Stanford University striving to contribute tangibly to the fields of end of life and palliative care, and the medical humanities. She enjoys running long distance and warbling the same songs in the shower all year long.

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by Amy Clarkson

We have a serious problem on our hands. It’s been around for decades, but it seems to be getting worse. Our problem? Death avoidance.

As a society, we keep getting farther away from the reality that death is inevitable. Death has gone from being something visible and an accepted part of life, to something invisible and far too easy to deny.

In the 1800s just as photography was coming into existence it was common to have a post mortem photograph taken just after someone died. These photographs were displayed in the home as a constant reminder of the loss. Death was something that happened in the home. Generations lived near each other, so it was common to have grandchildren present during the last days, as well as in the home around the deceased’s body during the day or two of the vigil and wake before burial.

Even the funeral processions were more visible. As loved ones walked behind a horse drawn carriage carrying the coffin in a slow mournful way, there was no escaping the knowledge of who had died, and all could see the family mourn openly.

Mourning in the 19th century also lent itself to something more visible. Loved ones dressed in black for a period of months to years. This custom allowed others to be reminded of death’s presence on a daily basis.

In our modern sophistication, we have drastically altered most of these past traditions. We don’t always live near family, and our elderly often are hidden away in nursing homes for their last months and years. Death occurs not in the home, but in hospitals and long term care facilities. Our distaste of death has seeped into funerals, which now are called a “celebration of life” with embalming practices to attempt to make the deceased look as alive as possible. We aren’t allowed to grieve for long, it’s too uncomfortable to face death. Mourners are subtly pushed to ‘get over’ their grief quickly and friends prefer not talking about it.

The word death itself is greeted as a morbid term. We use phrases such as “he passed away” or “he went to be with Jesus” to make it easier to say. I’ve seen it done in my own field. People don’t want to say ‘hospice’ because of its association with death, and prefer using the term ‘palliative care’ to push the reality of dying farther away. Another subtle trend is to use the phrase end of life, instead of saying someone is near death. The switch from life to death, diminishes our discomfort with death.

Recently I’ve had people say that even ‘end of life’ is too harsh. Should we come up with a new word for that period of life at the end? Perhaps we could call it the blue period. That way we cannot only avoid the word death but the word end as well.

What harm has our denial caused? Increased futile and sometimes painful treatments at the end, increased fear surrounding death and diminished meaning of life to name a few. We must remember that it is the realization of our mortality that gives us a reason to live.

Dr. Clarkson is a hospice physician for Southwind Hospice in Pratt, KS. This post was originally published in Dr. Clarkson's End Notes column for the Pratt Tribune. It is re-published here with the author's permission under a Creative Commons license.

Photo credit: "The Grim Reaper" by Trish Steel via Wikimedia Commons under Creative Commons Attribution-Share Alike 2.0 Generic license. 

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by Beth Fahlberg, PhD, RN, CHPN

My reflections in the article below are offered to teach and to promote better care. They are not intended as criticism. Instead, this message is offered to carry out my brother’s legacy, telling others about his experiences, so that care for others can be improved. Chris wanted to teach those caring for him to understand him as an individual with very complex and unique needs and a highly developed self-management plan to stay as healthy as possible. For years, he lived on a tightrope of clinical stability that could be thrown off kilter with any little change. I’m thankful for the support and care we received, and for the difference our palliative care team made in his last days.

In the last 6 months, since losing my brother Chris at age 47, I’ve been grieving. My grief has been more prolonged and intense than any other loss, not only because he is no longer with us, but because I continue to relive the terrifying times when he could not breathe. These episodes were particularly intense when he was hospitalized, and especially in the weeks, days and hours before his death.

In the hospital, he couldn’t just take an inhaler, a nebulizer, and an anti-anxiety med, like he would do at home. I wasn’t allowed to turn up his oxygen, or to give him his morphine, like I would do if we were at home. Instead, our well-honed symptom management plan was disrupted as soon as he was admitted. And ironically, this is where he needed his symptom management plan the most, when his heart and lung problems were at their worst.

• Yet I was scolded for turning up his oxygen, even though I’m a nurse, and had been doing this for him at home for years.
• When he requested a nebulizer, it often took 20-30 minutes. The nurse had to page respiratory therapy (RT) to administer it-nurses were not allowed to administer nebulizers on that pulmonary intermediate care floor.
• I had to advocate for him with numerous staff so he could even keep an albuterol inhaler at his bedside.

And on the day of his death, when he suddenly awoke from his unresponsive state, crying “Breathe. Breathe” with terror in his eyes, I couldn’t do anything except call the nurse who again had to page the RT. We waited alone for help to arrive- it took almost 20 minutes. Every moment was agony for us both. And the memory of this episode continues to haunt me.

The impact of symptom distress

How many times did he call me from the hospital during those two weeks, telling me “they’re not listening to me!”, his ongoing anxiety triggered by anything that was out of his normal routine for coping with his symptoms. How many times over the years of many hospitalizations did I get out of bed, and drive to the hospital late at night because he was distressed that they were doing things to him that he didn’t understand, or that he believed would exacerbate his symptoms?

• These episodes caused tremendous anxiety and distress for both him and for me throughout his last years, and especially during his final days and hours.
• These experiences had a detrimental impact on our satisfaction with his care.
• These memories continue to trigger my grief.

I’m not alone. Others have told me about ongoing distress over how their loved one’s symptoms were not controlled quickly, some of these stories from years past. And yes, I’ve even heard of this happening in hospice, both inpatient and home care. When asked about the death, these people relate vivid memories of their loved one’s distress and their feelings of helplessness and regret at not being able to do more. They also talk about their dissatisfaction-with the hospital, the hospice, the doctor, the nurse… whoever they feel was responsible. This distress can keep them from moving forward. It can also cause them to seek justice for their loved one- through social media, scathing satisfaction survey answers, complaints and even lawsuits.

The importance of patient and family control over symptoms

Every time he was admitted, Chris felt like control over managing his symptoms was the purview of everyone EXCEPT him. He became dependent on the nurse, the physician, the respiratory therapist, the pharmacist, and many others, as well as “the system”. He was afraid to say anything critical about this because he knew that he was dependent on them for everything. Losing control over symptom management in the hospital is anxiety-producing in normal circumstances and terrifying during a symptom exacerbation, especially when you feel like you can’t breathe. And so I live with regret, having been unable to adequately protect and defend my little brother from the terror of feeling like he was suffocating during his final days and hours.

Rapid time-to-treatment: A new focus for quality symptom management?

In Hospice and Palliative Care, symptom exacerbation or distress should be an emergency. But is it treated as such?

In the midst of my brother’s last hospitalization, frustrated and angry in seeing him suffer time and again, I wondered “Why isn’t symptom distress treated as a true emergency?” I began looking at this issue through the lens of my background in cardiology.

Ischemia is an emergency in cardiovascular care. Time to treatment has been used as a standard for quality care in cardiovascular emergencies, for over 20 years. As a cardiac clinical nurse specialist from 1996-8, I remember collecting data about door-to-drug times at my institution so we could minimize the time between patient presentation with acute myocardial infarction (MI), and treatment with tPa. This time-to-treatment focus continues to be used in to promote quality care in cardiovascular emergencies, now including stroke. This scrutiny of time intervals in the systems of care has been effective in identifying causes of treatment delay. It has provided data to streamline systems so they work quickly and effectively in cardiovascular emergencies.

If symptom distress is a priority in Hospice and Palliative Medicine, could this cardiac quality improvement method be used to streamline symptom treatment? Could symptom symptom distress be viewed as a critical incident, in which time intervals between each step in the system are recorded, from the patient/ family symptom report until the symptom is controlled?

Prioritizing rapid symptom relief

Rapid relief of symptom exacerbation and distress in the dying patient (or anyone with advanced illness, especially during hospitalization) is essential to quality care, yet it is rarely being treated as a priority. If it were, our care approaches and quality indicators would be different.

• We would give the patient and family more control over their symptoms in all settings, facilitating their use of personalized symptom management strategies in all settings.
• We would consistently order individualized multi-component rapid symptom relief plans, based on what they know works for the individual, and carried over from one hospitalization to the next.
• We would not abandon patients and family members in distress. Instead, someone would be present to provide support and non-pharmacologic symptom management strategies while others are getting meds and new orders.
• We would employ interdisciplinary comfort and support-focused rapid-response teams for symptom distress episodes lasting over a few minutes.
• We would do rapid-cycle improvement projects to reduce time from symptom report to relief.

These are some of my thoughts, based on my own experiences and reflections, and trying to be a voice for my brother who no longer can speak for himself. I look forward to hearing your thoughts and experiences.

Join in the conversation on the #HPM tweetchat this Wednesday, November 18, 2015 at 9 pm EST, when we discuss the following questions:

Topic 1: What is the immediate impact of poorly controlled symptom distress on the person who is dying and their loved ones, both immediately and long-term?

Topic 2: How do you promote rapid alleviation of symptom exacerbation and distress?

Topic 3: What guidelines and policies are needed to promote rapid time-to-treatment and patient-family control during symptom distress episodes, especially in acute care?

What: #hpm chat on Twitter
When: Wed 11/18/2015 - 9p ET/ 6p PT
Host: Beth Fahlberg, PhD, RN, CHPN @BethFahlberg

Beth Fahlberg is a nurse educator, clinician and researcher with clinical experience in a variety of settings including hospital, clinic and home. She began teaching nursing in Seattle in 1995, and is now developing interprofessional continuing education programs on aging, supportive and palliative care in the Division of Continuing Studies.at the University of Wisconsin-Madison. Her greatest passion in teaching is giving voice to the patient and seeing her students develop as compassionate, skilled clinicians, who embody the pallaitve care philosophies, principles and practices she has taught them. Her personal and professional lives have often overlapped, and she uses her experience to convey what’s important to patients and families in her writing. She writes a bi-monthly column on issues in palliative and end-of-life care in Nursing 2015.

You can access the transcripts and analytics of #hpm chats through @Symplur.

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by Jenni Linebarger

“… in the movie, sadness saved all their lives.”

I heard these words from a 9-year old at the end of an NPR story on Pixar’s new film Inside Out. (Note: that the audio has more than the webpage written content.) I thought to myself: There is a movie explicitly about emotions? About the importance of what so many deem to be “negative” emotions? What?! I need to see this movie. How can this movie be used within palliative care?

Such sentiments were supported further as I read stories from parents who wrote about the impact watching Inside Out had on their families. One writer notes, Inside Out is a movie in which you see the “beauty and bittersweetness of grief… Deep within the theme of this movie is also the impact that tragedy has on our past memories.”

With these reviews in mind, our palliative care team went to see the movie together recently. The movie lived up to the expectations set for me. I can imagine using the “characters” (emotions) to help explain the mixed feelings encountered in the word of palliative care.

I’m also still smiling at the scene in which Sadness sits down and listens to the life review of an imaginary friend named Bing Bong… She doesn't say much at all, but afterwards he is amazed about how much better he feels. Palliative care anyone?


Jenni Linebarger, MD, MPH, FAAP is a pediatric palliative care physician at Children's Mercy Hospital in Kansas City, MO. 

Image credit: Found via Idle Hands

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by Christian Sinclair

One of the classic benefits touted by any clinician when describing hospice is bereavement support for the family for 12 months after the death*. What bereavement support looks like depends on the hospice agency. Some are large enough to have departments of specially trained bereavement counselors, and some have a social worker who makes it part of their role.  What they offer may range from phone, email or letter correspondence to individual and group therapy sessions depending on the complexity of the case.  What I have always found interesting is this is not considered part of any insurance or Medicare/Medicaid benefit for someone who dies without hospice in a hospital or nursing home. Anyways, back to hospice and bereavement support...

One of the challenges with studying what hospice does is some of the fundamental parts of it are considered standard of care without ever being tested or analyzed**. Prognostication as eligibility criteria? Yeah, that makes sense for a benefit for dying people, except the science of prognosis has not kept up with the demands of the system for ever-increasing accuracy. Interdisciplinary care required? Sure, that makes sense, but how do we know which team members really work best for each patient, we've never tested it to look for improvements. Bereavement support for families - well now we have a study which may help us understand the impact of this lauded benefit.

Ornstein et al published "Association between Hospice Use and Depressive Symptoms in Surviving Spouses" in JAMA Internal Medicine in May 2015 looked at over 1,000 widowed spouses from the Health and Retirement Study (HRS) data set. 30 percent of the patient-spouse dyads had hospice experience for more than 3 days prior to death. They compared depression scale scores between spouses who had hospice experience and those who had none (to be accurate none, or 1-2 days of hospice). 52% of widowed spouses had more depressive symptoms over time no matter the exposure to hospice. In looking at improvement in depression scale scores over time, more widowed spouses had improvement if they had hospice compared to those who did not, although it was not significantly statistic (28% vs 22% (p=.06) of all spouses; 27% vs 21% (p=.10) for spouses identified as the primary caregiver.)

The most favorable finding for hospice use to help depressive symptoms in surviving spouses was not reported in the abstract results. Of the people who were interviewed (as part of the HRS study), 38% of spouses with hospice experience had improved depressive symptoms, a statistically significant (p=.01) improvement over those who had no hospice exposure (26%). For any of you odds ratio fans, that came out to an OR of 2.15!

Most media reports gave pretty favorable headlines to this study, which I think is close enough for public knowledge and understanding. Can you use this research in your hospice 101 presentation? Sure. Can you make some nifty graphics to share online? Sure. Can we use this information to help us better structure interventions for the bereaved family? Maybe.

First, while this is a strong study in terms of numbers, matching interventions with controls, and being somewhat objective to the intervention of hospice***, the study was unable to tell what bereavement interventions occurred and therefore it is difficult to tell what interventions are helpful and which have no effect or potentially harm. So this is not a full ringing endorsement of bereavement services, but rather hospice use.

As mentioned earlier on close examination it is not truly hospice for 3 or more days vs no hospice. The true selection criteria were hospice for 3 or more days vs 0,1,or 2 days of hospice. There isn't a solid explanation in the article for this awkward choice of group selection, and the only place it is mentioned is in the footnotes of Table 4. The authors rightfully note hospice enrollment for even 1 or 2 allows for access to bereavement services, so theoretically we are not testing two different groups.

So, overall this study (despite the confounding selection choice) does help demonstrate hospice use possibly leads to better depressive symptoms, but we need to look to other studies for a more accurate depiction of the impact of bereavement services on spousal and family coping over time. This is an area of study which would benefit from a good mix of qualitative and quantitative research,

Christian Sinclair, MD, FAAHPM is a palliative care doctor at University of Kansas Medical Center, and has been a hospice medical director for 11 years. He has witnessed the good works of bereavement counselors. 

*The regulations say up to a year, but nearly every hospice offers about 13 months of support to get people past the anniversary of the death.

** You know what else became standard of care without being tested or analyzed? PEG tubes in advanced cognitive impairment. It just 'made sense.' Only recently have we started to get the evidence published that it does more harm than good.

***  The depression scale was part of routine screening, not some asking you to enroll in a study of how hospice affects depressive symptoms in surviving spouses.

Ornstein KA, Aldridge MD, Garrido MM, Gorges R, Meier DE, & Kelley AS (2015). Association Between Hospice Use and Depressive Symptoms in Surviving Spouses. JAMA Internal Medicine PMID: 26009859

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by Lisa Podgurski, MD

Case:
Ms. K is an 75 year-old woman with peripheral vascular disorder who presented with acute onset of a cold, painful, blue lower extremity and was diagnosed with an arterial clot. In discussion with vascular surgery, she was offered amputation and after consideration she declined surgical intervention and chose to focus on comfort only. Palliative Care was consulted for assistance with comfort measures, given a likely prognosis of a small number of days. The patient’s daughter had been present for Ms. K’s conversation with the surgeon and understood that foregoing amputation would mean her mom would die soon. Ms. K’s daughter supported her mom’s decision and felt it was consistent with her overall values; the daughter expressed distress because this was happening in addition to the loss of her own husband, which continued to occupy her thoughts a great deal. The daughter relayed the story of their close relationship, his terminal decline, and his ultimate death, in vivid detail. In further exploration, it surfaced that his death had actually occurred several years ago, and that Ms. K’s daughter had struggled a great deal with functioning since then.

Discussion:

“Grief is not a disorder, a disease or a sign of weakness. It is an emotional, physical and spiritual necessity, the price you pay for love. The only cure for grief is to grieve.” – Rabbi Earl Grollman

Different people respond to the death of someone close to them differently, and a wide range of responses can be referred to as “normal.” Significant distress is common, and can be emotional, spiritual, cognitive, physical, and/or behavioral in nature. Some commonly-described reactions include: experiencing waves of strong feelings; disbelief that the person has died; somatic symptoms such as insomnia, palpitations, or changes in appetite; and perceptual disturbances such as visual or auditory hallucinations, or constant preoccupation with the deceased (Strada 2013). Labeling these experiences “normal” does not in any way imply that it will feel normal or comfortable for the person who is grieving. Nonetheless, for most people (90% or greater), this process will evolve over time into what is referred to as integrated grief, in which “the reality and meaning of the death are assimilated with a return to ongoing life” (Simon 2013). Sadness and longing may still be present, though less intensely, and the bereaved is able to have other activities at “center stage” for much of the time. In integrated grief, symptoms may feel amplified at certain times, such as anniversaries or holidays. For most people, a transition to integrated grief occurs within 6-12 months of the death (there is still some disagreement in the literature about exact timeframe).


Diagnosis: For some people, grief lasts much longer and is more problematic. In the literature, this is most often referred to as prolonged grief, complicated grief, or traumatic grief. The DSM-5 has included the diagnosis “persistent complex bereavement disorder”
as a subtype of other specified trauma and stressor-related disorders, warranting further study. There are reports that the ICD-11 will include the diagnosis “prolonged grief disorder.” Along with the debate about what to call pathologic grief, there is some controversy about the exact diagnostic criteria for the condition. The DSM-5 includes three categories of proposed criteria, with at least 1 of 4 features present from Criterion B and at least 6 of 12 present from Criterion C. Put more simply, some commonly agreed-upon elements of complicated grief include:

• Separation distress, with intense longing and yearning for the deceased
• Anger and bitterness
• Shock and disbelief; Difficulty accepting that the loss has occurred
• Estrangement from others
• Hallucinations of the deceased
• Behavior change: Over involvement in activities related to the deceased or excessive avoidance.

In screening for pathologic grief in your patients, consider the use of the Brief Grief Questionnaire, a 5-item tool scored on a 0-2 Likert scale (‘not at all,’ ‘somewhat,’ ‘a lot’). A score or 5 or higher warrants referral to a mental health professional (Shear 2006).

1. How much of the time are you having trouble accepting the death of _____?
2. How much does your grief interfere with your life?
3. How much are you having images or thoughts of _____ when he or she died or other thoughts about the death that really bother you?
4. Are there things that you used to do when _____ was alive that you don’t feel comfortable doing more, that you avoid? How much are you avoiding these things?
5. How much are you feeling cut off or distant from other people since _____ died, even people you used to be close to, like family or friends?

An intervention should be considered if a person has persistently high symptom severity, lack of temporal improvement in the grief response, functional impairment, treatment-seeking behaviors, hopelessness, and/or suicidal thoughts or behaviors.

Complicated grief may co-occur with other psychiatric conditions. In a recent multisite randomized controlled trial conducted by Charles Reynolds and his colleagues, two-thirds of the 400 complicated-grief patients enrolled also had major depressive disorder, and one-third had PTSD (Simon 2007).

Dr. Reynolds notes the significance of these “strong, complex patterns of co-occuring disorders” (personal communication). If a patient has persistent negative affect, endorses anhedonia, and/or suicidal ideation, appropriate treatment of depression needs to be considered.

Treatment: Patients and caregivers who seem to be experiencing normal grief reactions should be offered supportive psychoeducation clarifying and normalizing characteristics of normal grief. Referral for local grief counseling is also appropriate.

For more extended or severe grief studies are ongoing to establish the best treatments. There are randomized controlled trials supporting the use of cognitive behavioral therapy for prolonged grief (PG-CBT) and of an internet based therapist-assisted cognitive-behavioral indicated prevention intervention for prolonged grief disorder (Healthy Experiences After Loss, or HEAL) for prevention of PGD (Rosner 2014, Litz 2014). There are also studies supporting use of a targeted complicated-grief treatment (CGT) which is based on attachment theory and employs “techniques derived from prolonged exposure, IPT [interpersonal psychotherapy], and motivational interviewing.” A recent randomized controlled trial in elderly patients compared CGT to IPT, an evidence-based treatment for depression, and CGT showed significantly better outcomes (Shear 2014).

The role for medications remains unclear, as studies have had mixed results. Patients who develop clinical depression or anxiety disorders as complications of grieving should be treated appropriately for those conditions with medications (such as SSRIs) and/or therapy.

Case Resolution: 

Ms. K’s daughter’s intense and persistent grief response to her husband’s death years ago appears to be consistent with a prolonged/complicated grief reaction. Though it might have been a feature of normal grief for her feelings to intensify with a reminder of the loss, such as her mother’s impending death, the history she provides of ongoing struggle over the last several years suggests complicated grief.

Ms. K was transferred to an inpatient hospice setting for management of her pain and delirium. Prior to transfer, I made contact with the hospice agency who would be caring for her and her family to alert them to her daughter’s signs of prolonged grief from a prior loss. Hospice care will include 13 months of bereavement support for Ms. K’s family, and the agency’s bereavement counselor planned to contact Ms. K’s daughter prior to the death as well.

References:

1. Strada, EA. Grief and Bereavement in the Adult Palliative Care Setting. Portenoy RK, editor. New York: Oxford University Press; 2013. 118p.
2. Simon, NM. Clinical Crossroads: Treating Complicated Grief. JAMA 2013;310(4):416-423.
3. Shear KM, et al. Screening for complicated grief among project liberty service recipients 18 months after September 11, 2001. Psychiatr Serv. 2006;57:1291-7.
4. Simon NM, et al.  The prevalence and correlates of psychiatric comorbidity in individuals with complicated grief. Compr Psychiatry. 2007 Sep-Oct;48(5):395-9
5. Rosner R, Pfoh G, Kotoucova M, Hagl M. Efficacy of an outpatient treatment for prolonged grief disorder: A randomized controlled clinical trial. J Affect Disord. 2014;Oct(167):56-63.
6. Litz BT, Schorr Y, Delaney E, et al. A randomized controlled trial of an internet-based therapist-assisted indicated preventive intervention for prolonged grief disorder. Behav Res Ther. 2014;Oct(61):23-34.
7. Shear MK, Wang Y, Skritskaya N, Duan N, Mauro C, Ghesquiere A. Treatment of complicated grief in elderly persons: a randomized clinical trial. JAMA Psychiatry. 2014 Nov;71(11):1287-95.

Acknowledgment:
Many thanks to Bob Arnold and Charles Reynolds for valuable input in presenting this topic.


Image Credit: Grief is Not... Christian Sinclair for Pallimed. Image licensed via Canva.

Pallimed Case Conference Disclaimer: This post is not intended to substitute good individualized clinical judgement or replace a physician-patient relationship. It is published as a means to illustrate important teaching points in healthcare. Patient details may have been changed by Pallimed editors to help with anonymity. Links and minor edits are made for clarity and Pallimed editorial standards.

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by Lizzy Miles

One cannot work in end of life care without being challenged by boundary issues. Hospice and palliative care professionals are present during the most intimate time of a person’s life – their death. I certainly am not an expert on boundaries, but I do think about them often. Consider this article a set of contemplations regarding boundary challenges we face.

Challenge: The Appearance of Compassion versus Professional Neutrality

My first internship was at a mental health counseling center. My training emphasized having a neutral facial expression at all times. The purpose, I suppose, is so the client feels comfortable with being open with the counselor. If the client revealed an unpopular thought, the counselor would not want to have a reaction that would lead the client to feel self-conscious about their disclosure. It makes sense, in theory, but there are times when facial expressions are not only warranted, but helpful.

I was leading a bereavement group and a client told a story about feeling responsible for a relative’s death in a car accident. She told her story in great detail and by the end, most of the other attendees were crying. I managed to hold back my tears, but my eyes did water. After the group, the woman who told the story came up to me and thanked me. She said she had attended individual counseling and felt like the counselor didn’t even care. She said she could tell by my face that I cared.

A couple of years later, I went to a training by Bob Neimeyer, a well-renowned expert on complicated grief. He shared a video of a counseling session and he cried with the client who had experienced a tragic death. I felt validated; if he could share emotion, then it must be okay.

Where to draw the line: The key to compassionate expression, I believe, is to not grieve more than the client. If your reaction is so strong the client ends up comforting you, then you may need to examine your own triggers.

Challenge: Intimacy versus Professional Distance

When we come into a patient’s life during a hospice admission, we are there during the most vulnerable time. We begin as strangers and we have to build rapport through openness and being approachable. If we are “too” professional, we can come across as cold or uncaring. It becomes a balancing act. We want them to see us as likeable AND trustworthy AND professional.

As we see patients decline, we are there for them, listening to the most intimate problems they face. They may tell us about embarrassing symptoms or about interpersonal conflicts within their family. We are their confidants. If we do our jobs well, they are comfortable with us and comforted by us.

Most people who work in hospice and palliative care are in the profession because it is our calling. I’m sure every professional has heard the phrase, “it takes a special person.” We are special and we do this job because we care.

Where we get into trouble: It is possible to care too much. One of my mentors taught me the acronym NATO - Not Attached To Outcome. We should not become so involved in a patient’s care that we think we know what’s best for them beyond what they want. We also have to be careful our relationship with the patient does not preclude them from relying on their own social supports. This most often happens when there is negative family dynamics. We especially do not want to get in the middle of the family dynamics. It is not our family. We should be neutral.

Challenge: Teamwork versus Personal Time

Hospice and palliative care is a round-the-clock profession. In an ideal world, the organization would be a well-oiled machine and every team would be appropriately staffed to cover all scenarios. The reality of the hospice business is there are sometimes staffing issues, call-offs, and of course, vacations. My absolute favorite part about working in hospice and palliative care is the team. I love the IDG meetings and the feeling of camaraderie among coworkers with a shared passion. We care about each other. We communicate and we collaborate often. We don’t ever want to let our co-workers down. If one nurse is in the weeds, the others will pitch in to help out. I have never experienced teamwork at this level in any of my other professional roles.

Where do we draw the line? Sometimes our willingness to help out our fellow staff comes at a price. We cancel our personal plans and we say, “I’ll do it.” I'm sure you can remember a time you have done this yourself. Maybe you were asked on your day off to attend a death. Without a blink of the eye you said, "Yes, of course, happy to help." Your clinical manager never knew about the watercolor class, daughter's softball game or other event you missed.

Over time, though, one needs to be careful about self-sacrifice to the detriment of our own personal lives. If we give too much, we will leave nothing for ourselves. Each person’s capacity for where their line is may be different, but we must draw a line at some point.

Have I solved the great boundary conundrum? I wish. The boundary challenges come with the job. The key to maintaining boundaries is to be aware of our interactions. The ideal boundary “line” is balanced between what is best for the patient and what is best for us. If our boundaries are too restrictive, we risk the patient not feeling that we care. If we do too much for the patient, we risk compassion fatigue.

Lizzy Miles, MA, MSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can follow her on Twitter here.

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(Please welcome Rea Ginsberg, LCSW-C, ACSW, BCD to Pallimed. She is a retired Director of Social Work Services and Hospice Coordinator. She has extensive experience working with both children and elderly adults mostly in hospitals and long term care facilities. - Sinclair)

I’ve learned that people will forget what you said, People will forget what you did, But people will never forget how you made them feel.
-- Maya Angelou

We are often asked, How can you do that? How can you stand to do that work? Such a dreary subject. Grim but supposedly necessary. Don’t you get depressed with all the talk of dying? Facing death and its consequences every day must be the prime route to burnout. Are mental disorders prevalent among grief counselors? Aren’t you afraid all the talk of dying will make you a little crazy? Don’t you find it frightening, talking about death and dying all the time? Don’t you want some joy in your life? Do something else, anything that doesn’t relate to death.

What were they thinking? Grief counselors seem to have a mournful reputation.

Look below the surface. Our society does not like pain in general. We do not appreciate it. We do not want confrontations with it. We have a national aversion to it. We are busy developing a pill or procedure for every manner of pain, physical and psychic. If it hurts, then by definition it is bad and requires fixing. We are determined to find a surefire anti-aging formula that will also extend our lives forever. Cryogenics? Yes. It shows promise. Really intriguing, actually very exciting, but it is not yet ready for wide use. It could be a future plan. Think forward to pain-free existence. But when?

In our society, death is a painful subject for the patient and for the family. It is an unacceptable outcome of care, health care. We don’t like it. We are inclined to do everything possible to avoid it, even when the alternatives bring far worse health and increased suffering to the patient. Overall, we still prefer to avoid and deny death in our national and personal conversations. Let’s change the subject and be happy. After all, in our American tradition we are entitled to happiness – plus life and liberty. In our attitude, we presume to live forever. It is just easier that way. Finding the easiest way is our American goal. No pain, no awkward planning, no scary discussions, no sad thoughts about loss. We like to live in a wish-fulfillment bubble, a place where death does not happen. Not to ourselves, not to those we love. No talk of tears and fears and sorrow.

The only trouble is that a pain-free life is impossible. For all our pushback and passionate hopefulness, the search is in vain. Pain is inevitable in every human life. Like it or not, wish against it or not, there it is. Pain waits patiently and outlasts our resistance. It is a fundamental fact of life. Death is also a fact of life, a fact until further notice. Significant loss occurs in every life. Death occurs to every life. Death hurts. It causes grief. There is yet no pill to make it go away. Maybe there should not be such a pill. Enter: the supportive grief counselor.

Survivors need interpersonal help and healing. Usually, friends and family do the job. The path is painful and also lonely at times. Sometimes, a professional counselor is just the right remedy. He is prepared to be a companion for a time, along the way to reconstructed balance and equilibrium. Along the way to adjustment. He is equipped to hear the hurt and lighten the load. In a hurry-up, get-over-it society, the grief counselor is a safe harbor in the mourning storm. His focus is not time. It is not a predetermined schedule. It is not a deadline for completion. His focus is connection, understanding, and support. It is helping the survivor to feel comforted because someone who knows grief is actively listening. The center of his attention is less advice and more the not-so-simple act of being with the survivor, to facilitate self-rediscovery and restore dignity.

Psychologist J. William Worden writes, “When unanticipated or incongruous events such as the death of a loved one occur, a person needs to redefine the self and relearn ways to engage with the world without the deceased. The person cannot return to a pre-loss level of functioning but learns how to develop a meaningful life without the deceased loved one.…Death can challenge one’s assumptions about the world (spiritual adjustments) and one’s personal identity (internal adjustments).”

The power to heal psychic wounds is rare and precious. Few people have this skill. It is needed. It is a service. It becomes a moral obligation for those who have that power. To have it is to take pleasure in exercising it. To have it and withhold it is unethical. It is contrary to conscience. It defies accepted standards of professional behavior. It is also unhealthy because there is nothing more important in life than human connection. To assist the progress of connection provides further integrity and growth to the facilitator. The grief counselor is rewarded in greater wholeness, in life lessons studied, learned, and integrated. Death is not an enemy. It is a creative disrupter. It is one of our most profound and valuable teachers. It is life-affirming. It is our gateway to meaningful and vigorous life.

Emergency physician Monica Williams-Murphy comments similarly, from a slightly different perspective: “What human would rob another of the most touching and beautiful moments of life?.…Death…allows us to cherish both life and time more fully.”

Dreary? Depressing? What were they thinking…?

1. J. William Worden, PhD, “Introduction,” Grief Counseling and Grief Therapy, fourth edition, New York: Springer Publishing Company, 2009.

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(Editor's note: Each year we will update this page with newer articles that come out highlighting the relationship between Father's day, remembrance and grief. - CTS)

by Christian Sinclair

I drove from Kansas City to Oklahoma to bury my father in a Veteran's Cemetery two years ago this summer, not long after Father's Day. I have not really thought much about that day in the following two years.  Which now feels kind of strange. Shouldn't I be think about it like a normal grieving adult child?

It occurs to me now as I anticipate my wife and kids to celebrate my tenure as a father, that days like these are also memorial days for so many people.  Although I have talked with many people who have also lost one or both of their parents, it never really occurred to me as it is this week, the profound impact of what it means to 'celebrate' Father's Day without your father.

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Meghan O'Rourke wrote a great series of articles on grief for Slate Magazine in 2009 that will soon be part of a newly published book, The Long Goodbye.  The articles were featured on Pallimed when they first appeared and a worthy read when you get a few moments.

At the end of March, Slate published a survey asking about grief experiences.  30 questions with plenty of open ended answers.  The post already has plenty of comments which seems ripe for a dissertation or at least a letter to the editor.  Wondering what type of research this would be and why no one is publishing 'Qualitative analysis of readers comments to online article about grief.'  Regardless...I just wanted to point this out to say there are good journalistic sources out there tackling the tough issues to really subvert the notion that we are a death-denying culture.

Photo Credit: From Slate - unknown attribution