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Study: Patients, families often experience abandonment at end of life
Actions to mitigate those feelings are necessary
Feelings of abandonment on the part of patients and their caregivers are not uncommon as they transition from treatment to end-of-life care, according to a recent study completed by a team at the University of Washington.
The findings were published in the March 9, 2009, issue of the Archives of Internal Medicine. 1
"What we found was that patients and families experience abandonment around the end-of-life care through the process of receiving care from physicians," says J. Randall Curtis, MD, MPH, a professor of medicine in the Division of Pulmonary and Critical Care at the University of Washington in Seattle and senior author of the study.
"Sometimes this abandonment occurred in the context of transferring patients to hospice, because of the way the hospice benefit has been created in the U.S., he says. This oftentimes requires that physicians basically turn their patients over to the care of someone else. You know, hospice, by and large, does a fabulous job of providing that care, but it often does mean losing that contact with the physicians who have been caring for patients and families for quite a while. So, patients can experience that as abandonment."
While patients experience the sometimes sudden transitions in care as abandonment, physicians, on the other hand, experience the separation as "lack of closure," Curtis says.
"They talk about this feeling of lack of closure, but we found that physicians, as they talk about that, don't really connect that to the patient and family experience of abandonment," Curtis says, noting that this was one of the major findings of the paper.
That sense of lack of closure on the part of physicians, he says, "ought to trigger physicians to act on that by trying to reach out to patients and families and to reduce their sense of abandonment."
It may take findings and published research like the University of Washington study to inform clinicians that patients feel this sense of abandonment, says Margaret L. Campbell, PhD, RN, FAAN, administrative director, nursing administration, Detroit (MI) Receiving Hospital. Campbell also is board president for The Hospice and Palliative Nurses Association, based in Pittsburgh, and an assistant professor — research at the Center for Health Research, College of Nursing, Wayne State University.
"For some readers of that paper, it's going to be an 'Ah-ha' moment," she says.
Campbell's own palliative care practice is hospital-based, and many of the patients she sees are in the intensive care unit (ICU). She often sees transitions in "goals of care" when the focus shifts to palliative care. Her team takes over the care of patients who may be transitioning from the ICU.
"There have been observations — mostly from families of these patients — that they feel abandoned by the team that they had been intensively working with from the time of the patient's admission to the hospital until the transition to palliative care, " Campbell says.
"Similarly, I've had critical care nurses express a wish that, 'Can't we keep the patient here on the intensive care unit, because we want to see closure with this case. We want to follow this patient and this family until the patient's death."
Not only does Campbell say that the observation of abandonment that the University of Washington identified is "common," also her colleagues in hospice care have identified that they're new to the patient, and that can create challenges.
"They're coming in at the eleventh hour, so to speak, and patients have identified, 'So, what about my doctor that discharged me from the hospital? Am I not going to see my home care nurses anymore?'"
That is true, she says, because home care and hospice nurses often are not provided within the same agency. But there are ways to mitigate such feelings, she says.
What patients feel at end of life
According to the paper, there are "two kinds of continuity losses" felt by patients in end-of-life care. One kind of loss involves "losing access to their physician's medical expertise."
"For example, one patient said, 'I feel I need more help now than I did . . . and by help I mean I need to be able to depend on my doctor, and I guess I want her to know that, "If I call you next week, doctor, will you see me right away?"'
Another patient in the study expressed concern that, when transitioning to hospice, "someone else would take over who doesn't have a lot of history with [the dying] person . . . I think that one could feel relatively abandoned."
The study points to a second kind of "continuity loss," which is the loss of the patient-physician relationship itself, seen as separate from the provision of medical care alone by the physician.
One patient expressed the thought that he knew there wasn't anything the physician could do for him at that point, "And I realize that, but they can hold my hand, so to speak, to the very end."
The paper also indicates that a nurse remembered how the fear of abandonment was expressed as "desperation," with the patient asking at the time of an unexpected hospital admission, "Will you go with me? Will you come out and see me?"
Families also expressed a sense of abandonment, according to the paper.
One family member was quoted as saying, "The way they presented it . . . they're just here to make you comfortable until you die. But you can't seek your regular treatment from your doctor. Your doctor is out of it. And that's not what we want."
Physicians' perspective on saying goodbye
Although physicians did not connect their own sense of lack of closure to possible feelings of abandonment on the part of patients and families, they were, according to the paper, "conscious of the possibility that patients would feel abandoned, " according to the article.
"One physician described his approach to explicitly address abandonment: 'And what we need to do, now, is refocus our efforts and treat your symptoms. That doesn't mean we're going to abandon you.'"
However, the paper indicates that after a patient's death, "physicians were sometimes unaware that family members experienced this lack of closure as abandonment."
One physician in the paper cited time and logistical constraints to contacting patients after they were no longer actively caring for a patient in hospice. That physician commented that "There are only so many hours in the day, and I have, probably, at any one time, 10 to 20 patients on hospice. And if I started calling them up, there would be this problem and that problem . . . and quite frankly, it's care that's not reimbursed."
Another physician was asked if he said goodbye to patients, and he indicated that he did, and that sometimes he cried, although he said, "But I try not to. It's too disruptive to my day . . . I sometimes am afraid that I'm going to break down, so I tend to gloss over it."
What caregivers can do to mitigate abandonment
In addition to issues of lack of closure for physicians and feelings of abandonment by patients and families, Cynda Hylton Rushton, PhD, RN, FAAN, says there also are typically "issues around emotional and spiritual abandonment, and fears around loss of relationships."
While that relates to issues of continuity of care and closure, she says, "I think that's a very important aspect of the sense of abandonment [that is] around the quality of the relationship and the level of engagement in the relationship."
"What may be happening here [is] some sense of unmet needs in terms of that relationship," Rushton notes. "And I think it's an area we haven't really explored very fully [regarding] what patients' and families' expectations are around their relationships with health care professionals."
But there are actions that caregivers can take to either prevent or mitigate those feelings of abandonment by patients and families — as well as for institutions to take to help alleviate health care providers' lack of closure and to help them address any other feelings that may surround the patient-provider relationship.
"I think one of the things that seems fairly simple, but is actually complicated, is changing our language around how we talk about those transitions in treatment, so that the language of, 'There's nothing more we can do' — we extinguish that from our conversations," Rushton suggests. "That, in and of itself, can often be a statement that is received as abandonment."
Rather than reinforcing connection at that time, it reinforces abandonment. She also suggests that this is a statement that is not accurate. The reason is that even though a patient may no longer be receiving treatment that is "disease-directed," there is "still an incredible amount of care and caring that we can provide for them in terms of emotional and spiritual support [and] advance planning."
Both Rushton and the paper's senior author, Curtis, suggest that an increased focus on interdisciplinary communication and approach toward the patient could be helpful. For example, the responsibility for reaching out may not only be the physician's duty, but the duty of other members of the health care provider team, "who are, in a way, agents of the entire group to reach out to families."
Curtis tells Medical Ethics Advisor, "I think there are tremendous opportunities to improve communication with patients and families, and one way to do that is by having better interdisciplinary communication and collaboration.
"I think a lot of times, unfortunately, the way we practice now is that nurses often feel like they have to stay away from these delicate topics, because they don't know exactly what the doctors have said to the patients and families — and they don't want to step on any toes, or say something that isn't supportive of what the doctors have said."
The fragmented nature of the health care system is also a factor in that it doesn't always do a good job of insuring continuity of care between different settings of care, Curtis says. He says we now have intensivists in the ICU, hospitalists in the hospital, outpatient doctors in outpatient centers, and hospice physicians.
"There's a reason we developed that way, because these are all such highly specialized fields, but what it does is it leads people to feel abandoned each time they go from one setting to another setting," Curtis says. "And I think we need to find ways to ensure continuity of care across [multiple] settings."