November 2017

When a longtime patient dies: How clinicians cope

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It’s not unusual for any practitioner to experience complicated emotions when a death or a terminal diagnosis disrupts the personal bond forged with a patient over many years, but experts say lower extremity clinicians often are not well equipped to deal with these emotions.

By Emily Delzell

When a patient to whom an Australian podiatrist had grown close over years of appointments died unexpectedly, colleagues got in touch to say they’d heard and to ask how she was doing. They shared their own stories, talking about good deaths and not so good deaths, and how they had been affected.

During these conversations, Cylie Williams, PhD, MHlthSc(Hlth Ed&Prom), BApSc(Pod), realized many of her peers had grieved the death of one or more of their patients.

“Some were substantially affected, some had gone to counseling, and a few said it had changed their work practice because they couldn’t deal with it anymore,” she said.

Lower extremity professionals often spend substantial time with their patients during appointments, and with some, form a bond that feels personal. It makes sense that clinicians might experience complicated emotions about a longtime patient’s death, but Williams and others say, for a variety of reasons, some clinicians are not well equipped to deal with those emotions.

In her conversation with Williams, Kristy Robson, PhD, a podiatry lecturer at Charles Sturt University in Albury, Australia, noted the young podiatrists she mentors probably don’t consider how they might feel when a patient dies.

“Kristy said, we need to tell [our colleagues’] stories to help prepare these students for the inevitable; that as part of your practice you will have patients who will die, and it’s possibly going to be someone for whom you have cared for some time,” said Williams, who is an NHMRC (National Health and Medical Research Council) early career research fellow at Monash University and a private podiatrist at Kingston Foot Clinic, both in Melbourne, Australia.

Clinicians who struggle with patient death may not be able to support dying patients and their families, which can compromise the quality of the patient’s end-of-life care.

She and Robson delved into the topic of caregiver grief with an interview-based study of podiatrists who had been in practice at least five years and who had recently experienced the death of a long-term patient. Recognizing the emotional impact of the patient-caregiver relationship and the importance of having someone—usually a colleague—with whom to discuss these feelings were major themes emerging from the work, which the Journal of Foot & Ankle Research (JFAR) epublished in August.1

“One of the things that came out is that some podiatrists work is relative isolation and may not have an immediate colleague to debrief to,” Williams said. “We also found dealing with chronically unwell people through the aging process can take an emotional toll. The nature of general podiatry is that you’re going to see a lot of people as they age, and form a relationship with them. You have them for half an hour at a time, and while your hands are working you’re chatting about your day, your family. You get to know them quite well.”

Coping strategies

How providers are affected by a patient’s death has much to do with their own experience with death and dying,2 the nature of the death (unexpected deaths and difficult family situations may heighten grief reactions, for example),3 and, as Robson and Williams recognized, the length and depth of the provider’s relationship with the patient.4

Interviewees in Robson and Williams’ study commonly reported feeling a professional need to hide their grief, and that because their grief was work-related it should have less emotional impact than other, more personal, deaths. Other research has noted that some healthcare providers feel a need to experience their sadness in isolation, particularly in work cultures where clinician grief is not discussed openly.3,5

Social support at work is one key to coping with grief,6 and in disciplines and hospitals with high patient mortality, provider grief is formally addressed in both regular and as-needed meetings and educational sessions in which caregivers debrief about their emotions.

Wendy Walters, LICSW, the clinical ethics consultant at the University of Alabama at Birmingham, leads regular compassion rounds in the medical intensive care unit (MICU) for both nurses and physicians to discuss the emotional impact of caring for acutely ill patients. Other than the palliative care unit, this ICU has the highest patient death rate at the 1150-bed hospital.

“I talk to the nurses, interns, residents, and fellows, and say, ‘Tell me about the hardest case that you had, and how was it hard, and what did you do for yourself?’ When other staff hear those stories and feelings they realize everybody is feeling something, and it is an enormous release,” Walters said.

She also coordinates regular Schwartz Center Rounds, part of a national program in which caregivers are encouraged to open up about difficult emotions, for much larger groups of staff. The Schwartz rounds are the best-attended grand rounds among hospital staff, and are often seated to capacity, she said.

Lower extremity professionals in private practice often don’t have the resources for dealing with death and dying that providers in large hospitals can access, but they, too, must find a way to cope, Walters said.

“Some people get it out through artwork or another creative outlet, through journaling, through religious beliefs and practices,” she said. “I’m a talker, and in order to feel better I’ve got to talk to someone I can trust who’s going to support me and understands the world I live in—what it’s like to care for really sick people and people who die.”

When Walters was a newly minted hospice social worker in Birmingham in the 1980s, she was one of three such professionals in the area.

“We formed our own support group, and met for lunch once a month,” she said. “Sometimes we’d talk about our patients, and sometimes we didn’t, but it was a way to be with people who understood what it was like to be isolated and doing that work.”

Research and human experience suggest people process the death of a patient in different ways. A 2017 Journal of Clinical Nursing (JCN) review of studies on how nurses deal with patient deaths found these caregivers used a variety of resources, such as boundary setting, personal refection, religious beliefs, self-care, crying, attending funerals, and contacting family members, as well as informal talking, education about death and dying, and professional debriefings.7

When grief is unaddressed, clinicians can experience heightened stress and unhappiness at work, physical and psychological problems, burnout, and compassion fatigue, a draining away of compassion over time that leaves sufferers feeling hopeless, anxious, and relentlessly negative; some providers dealing with these symptoms ultimately leave their professions.8 The care of patients can also suffer. The JCN review reported caregivers who can’t cope with patient death may not be able to support dying patients and their family members, which compromises the quality of end-of-life care.7

“Part of what every clinician must do, no matter what their discipline may be, is to find their own line where they draw enough barriers to protect themselves emotionally, but not so many that they become hard and nonpliant and lose their compassion for their patients, because you see that as well,” Walters said. “You see people get hard and cynical, where even the most tragic of deaths don’t seem to affect them. I think that is equally as problematic as not being able to cope well with the grief: setting too high an emotional barrier so that you’re not feeling anything for the people you’re caring for.”

These are some of the hazards, but for many of the practitioners interviewed for this article, experiences with patient deaths have brought a deeper understanding of the existential issues with which we all struggle, as well as a greater appreciation for the role they play as healthcare providers.

Provider experiences

Cylie Williams heard about the death of her longtime patient from one of his family members, who called to cancel his upcoming appointment.

“I was quite affected when I got the phone call,” she said. “His family had seen his appointment card on the fridge and called to let us know, but the funeral had passed. I would have liked to have gone; this was a person I’d seen every six weeks for half an hour for seven years. I knew the names of his children, his grandchildren.”

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He was a favorite of the practice staff, who looked forward to visits, she said. He kept bees, and he’d bring in their honey along with cookies baked by his wife, who died a few years before he did.

“You knew it was good day when you saw his name in the diary,” Williams said.

She dealt with her feelings by reaching out, first on a personal level, talking to a staff member who had also been fond of the patient.

“The most important thing I did was ask for help when I needed it,” she said. “My practice manager is a phenomenal young woman and she loved him just as much as I did. We brought in lunch, closed the door, and had a chat and a cry. Later I had a talk about him in a staff meeting because I was conscious that he was a practice favorite, and I didn’t want my younger podiatrists to be upset and not have an outlet.”

It was in this spirit that she and Robson wrote the JFAR paper, which the Australian Podiatry Council subsequently sent to all its members along with resources for coping with grief and depression.

Surgeon’s perspective

The risk of patient mortality is a fact of life for lower extremity surgeons, particularly in cases involving diabetes, obesity, peripheral vascular disease, and other comorbidities. Understanding that risk, experts say, can help surgeons cope when patients die.

Michael S. Pinzur, MD, professor of orthopedic surgery at Loyola University Health System in Maywood, IL, has many patients who are very sick, suffering from advanced diabetes and numerous comorbidities, and has experienced many patient deaths. He teaches his residents they need to prepare for the fact that some of their patients will die in their care.

“I tell them bad things are going to happen, an infection, an amputation, and that you have to think about these things up front,” Pinzur said. “Patients don’t always realize the magnitude of a surgery, and they need to understand their situation. When you’re operating on a person, you’re going on a journey with them, and part of the process is educating the patient about the risks of things you’re considering. You have to look at alternatives, and when you do undertake surgery, you do it because you’ve made the patient a partner in making the decision.”

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Pinzur recalled a patient for whom he’d done a total ankle arthroplasty while she was in her early 70s. She’d been happily active since then, but her implant was failing, her pain had returned, and in her 80s she came to Pinzur for a revision. As part of the decision-making process, he sent her to a cardiologist, who evaluated her ability to withstand surgery; the heart specialist said there a was a 30% to 50% chance she wouldn’t survive the anesthesia. Pinzur didn’t operate.

Fear of failure, he said, is one way he copes with caring for such a sick population.

“I have to sleep at night,” Pinzur said. “Young surgeons often think they’re going to get their best results with every patient they operate on, but the reality is you get a bell-shaped curve. I have to make certain intellectually that, from a team perspective, we’ve done everything we can do to optimize the patient, minimize the risk, and optimize the potential for a favorable outcome. When people die, as they inevitably will, I feel bad about it, but I remember I’ve done everything I can to partner with them and to minimize the risk and maximize their chances for medical optimization.”

Pinzur also believes in clear boundaries.

“When you get emotionally involved you lose your objectivity. You need to be empathetic, but you can’t get subjectively emotional. Marcus Welby is not a good model for modern medicine,” he said. “If you’re prepared up front, you’ve done your homework, and partnered with the patient and the family, when something happens, you can deal with it.”

Physical therapy perspective

Bill Staples, PT, DPT, DHSc, associate professor in the Krannert School of Physical Therapy at the University of Indianapolis and president of the American Physical Therapy Association’s Academy of Geriatric Physical Therapy, teaches students a section on death and dying.

“Many of the physical therapy students have never had to deal with a death—often they still have both sets of grandparents—and are thinking in terms of sports and orthopedic injuries,” Staples said. “I tell them if you know somebody is on the last lines of life, the idea is to help them maintain the best quality of life they can, and that they need to have some degree of acceptance that they’re helping them on their journey through life, which for all of us ends in death.”

Staples thinks the nature of the physical therapy profession makes emotional connections inevitable. He provides home care, and seeing patients in their personal spaces and among their families means he gets to know them quickly.

“We’re all human, and PTs tend to get into the profession because they want to help people, so it’s going to happen,” he said. “But if you get too attached, there are some consequences for that.”

He sometimes attends patients’ funerals, but knows not all clinicians feel comfortable doing so.

“I make a point of attending the funeral of patients I’ve gotten to know well as a way to let my emotions go and to get through the acceptance process,” he said. “That said, I know everyone has to deal with it in a different way. I know therapists who won’t go to the funerals because they feel like they would be too grieved.”

Dealing with family members of dying patients can also bring up strong emotions. Staples recalled a terminally ill cancer patient who after a time decided more therapy wasn’t going to help her.

“She wanted to stop, and I was in basic agreement; her disease course was among the most aggressive I’d seen,” he said. “In a very short time, she’d gone from being able to walk independently to being just about chair bound. Her family was pushing her to continue; they were in denial and she was in acceptance—at opposite ends of the spectrum.”

Staples talked with the family, who wasn’t happy with what he was saying.

“I recommended they get some more help from counseling. Those were very difficult conversations,” he said.

O&P perspectives

McCarthy “Mac” Hanger III, CP, a consultant at Lim Innovations in San Francisco, has experienced several patient deaths that have affected him deeply. He takes comfort from the resiliency his patients have shown—and from his own role in helping them regain mobility.

“I had a patient who was an above-knee amputee. He was a very funny, very dry guy. He had progressive peripheral vascular disease and just a few years to live when he came to me,” Hanger said. “But he was very determined to walk and not be dependent on his wife. He wanted to preserve his marriage as it was before he was disabled and to keep that love alive. I came to admire him and his wife for their determination to keep going, to preserve their marriage, and to stay active in the community and engaged with their children and grandchildren.”

The man was a demanding patient, pushing Hanger to help him continue his progress.

“He’d give me a hard time, and I realized he was pushing for the best outcome he could get, and that that was a good sign,” Hanger said. “When he suddenly died of a heart attack, it surprised me how much I was affected by his death.”

Hanger called the man’s wife to express his sorrow for her loss.

“I shared with her my admiration for him and for her. I wanted to make the call professional and respectful, and I think that’s what we as professionals have to do; be very respectful, and understand your place, that you’re not a family member,” he said.

Asked about how treating patients who have died has affected his own feelings on mortality, Hanger said, “I don’t know if I’m less afraid of death, or more afraid of death. I saw a man die last night in the hospital, and it just makes you think, have I done enough? Have I helped people enough? Will my kids look back on me with pride? I’m over sixty now, so I’m thinking more and more of the legacy I’m leaving.”

Frank Snell, CPO/LPO, FAAOP, president of Snell Prosthetic & Orthotic Laboratory in Little Rock, AR, is 66 years old and has patients he’s been fitting with prostheses for more than four decades. He chose to focus on the prosthetic side of his third-generation family business in part because of the opportunity to develop long-term relationships with his patients.

Among them have been a number of veterans, some terminally ill. Snell has particularly admired his patients who are World War II veterans, people of his father’s generation.

“They fought the war that saved the world that I live in and get to prosper in,” he said. “One gentleman I got to know very well was a transtibial amputee. He told me his story of the Battle of the Bulge, of being in the freezing weather and having a mortar shell come in from the German offensive and blow his leg off. They couldn’t evacuate him until the battle was over. A medic would come by once or twice a day and check on him, make sure his tourniquet was ok, and give him some morphine. I was thinking of this eighteen- or nineteen-year-old lying there in a foxhole for days—how does someone go through it?”

Snell describes the patient in his later years as “a gem of a gentleman, a very soft-spoken man. I remember his illness and his death, seeing him in the VA hospital, and seeing him in his last days. I went to his funeral, and I am still in touch with his widow.”

He’s also had conversations about death with terminally ill patients.

“I have a patient with leukemia, and he shared with me, the last time he was in, a book he was reading about facing eternity,” he said. “We’ve had some very open and honest discussions about it, but we don’t dwell on the sadness.”

Snell, a man of strong religious faith, wanted to comment for this story because, despite his closeness with patients, he wasn’t sure his emotions related to their deaths could be called grief.

“This is my life’s work, and it is important to me,” he said. “I want to leave it a little bit better than I found it. I don’t feel like I’ve ever grieved for a patient; I understand the circle of life, that everybody’s born to die, and that it’s what we do between now and dead that’s important.”

Finding a balance

Wendy Walters, who is asked all the time how she copes in a job in which all of her patients die, said emotional connections and feelings of sadness and grief are inevitable among professional caregivers.

“We are human beings, we cannot help but be affected by the patients we take care of, but we do have to figure out a way to let it go,” she said. “There’s a Lakota Indian philosophy I sometimes relate: You show up, you are present with people, you tell the truth, and then you let go of the outcomes, because unfortunately our patients are going to die.”

Being able to see things from such a perspective requires time and experience—and a willingness to acknowledge and process feelings.

“One thing you learn with time, especially if you’re working with people who are very ill, for example, with end-stage diabetes, is that death is not the worst thing that can happen,” Walters said. “Patients may have many events that could lead to grief and loss all along the journey, and I think seeing the prolonged suffering that some people go through changes how you are able to cope.”

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She has also learned that training and experience can’t always insulate clinicians from sudden, difficult emotions.

“Sometimes a patient may remind you of your grandmother, or yourself in terms of your age or how many children you have, and those common-ground factors can make you personalize it a little more,” Walters said.

She recalled experiencing this a few years ago during a meeting with the family of a young man who had been in a car wreck.

“The trauma surgeon and I were talking with the parents. Their son had a nonsurvivable injury, and we were talking about removing him from life support,” Walters said. “At the time, my son was the same age and had just had a car wreck himself. He was fine, but all I could think about was how I would feel if that trauma surgeon was talking to me. I found myself with tears streaming down my face to the point that the family stopped to ask if I was ok, which is not what they needed.”

Walters sometimes tells this story to staff during her unit meetings.

“It’s good to show compassion, but if you collapse and dissolve with your own personal emotions you are not being helpful to the patient and the family who we as professionals are there to support,” she said.

Knowing she is helping patients at the end of their life is one way Walters keeps herself balanced between compassion and more overwhelming emotions.

“Many people really struggle with existential issues at the end of life: Why did this happen to me? Will I be remembered? Did I live my life well?” she said. “We as healthcare professionals can help validate that their lives did have meaning based on our own relationships with them. It’s a process of giving and receiving gifts—if you can share with a patient how taking care of them has impacted your life and provided meaning to you, it flips around and gives meaning to them, as well. We give and receive those gifts to and from our patients all the time.”

REFERENCES
  1. Robson K, Williams CM. Dealing with the death of a long term patient; what is the impact and how do podiatrists cope? J Foot Ankle Res 2017;10:36.
  2. Saunders JM, Valente SM. Nurses’ grief. Cancer Nurs 1994;17(4): 318-325.
  3. Granek L, Krzyzanowska MK, Tozer R, Mazzotta P. Difficult patient loss and physician culture for oncologists grieving patient loss. J Palliat Med 2012;15(11):1254-1260.
  4. Papadatou D. In the Face of Death: Professionals Who Care for the Dying and the Bereaved. New York, NY: Springer Publishing Company; 2009.
  5. Papadatou D. A proposed model of health professionals’ grieving process. OMEGA-J Death Dying 2000;41(1):59-77.
  6. Papadatou D, Papazoglou I, Petraki D, Bellali T. Mutual support among nurses who provide care to dying children. Illn Crises Loss 1999;7(1):37-47.
  7. Zheng R, Lee SF, Bloomer MJ. How nurses cope with patient death: a systematic review and qualitative meta-synthesis. J Clin Nurs 2017 Jul 26. [Epub ahead of print]
  8. Carton ER, Hupcey JE. The forgotten mourners: Addressing health care provider grief—a systematic review. J Hosp Palliat Nurs 2014;16(5):291-303.
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