As hospital-based palliative care programs continue to grow, palliative care specialists are eager to dispel misconceptions about their work.1 Quality palliative care management at the end of life is often mistakenly perceived as synonymous with adequate pain control, but controlling pain is just one of the facets of effectively moderating the intensity of patients’ and families’ suffering.
The cases narrated here illustrate some of the other common themes of good palliative care management at the end of life: aggressive symptom management, interdisciplinary teamwork, and attention to patients’ and families’ spiritual concerns. Active, respectful listening can help to identify and alleviate obstacles to a more humane end-of-life journey.
Time to Process the Big Picture
State-of-the-art medical therapy does not always address dying patients’ suffering, says Melissa Mahoney, MD, assistant professor of medicine at Emory University and co-director of the Palliative Care Consult Service at Emory Crawford Long Hospital in Atlanta. She experienced this firsthand with a request to consult with a 60-year-old woman who had been in and out of sub-acute rehabilitation facilities seeking pain relief for her spinal stenosis. During a recent rehab facility stay, she had become septic and was transferred to the hospital for dialysis and other treatments. When Dr. Mahoney met the patient, the woman had been saying that she wanted to die, and her family was supportive of her wishes.
During her first conversation with the patient, however, Dr. Mahoney was able to discern that when she said she wanted to die, the patient meant, “I’m in so much pain that I don’t want to live this way.” The first step for the palliative care team was to begin patient-controlled analgesia (PCA) with IV hydromorphone hydrochloride in an attempt to control her pain. The PCA worked—dramatically.
“The next day,” recalls Dr. Mahoney, “she was like a new person. She was able to cope with the idea of dialysis and was able to talk with her family and put things in perspective.”
The palliative care team followed the woman for months, as she continued a cycle of readmissions to both the sub-acute facility and the hospital. The difference from the previous scenario, however, was that the team could offer aggressive symptom management while encouraging the patient and her family to revisit quality of life issues. She eventually died in the hospital, but Dr. Mahoney believes that the palliative care team’s interventions and emphasis on communication helped the patient and her family to cope with the situation more effectively.
With pain under control, patients can begin to address such questions as What’s important to me now? How do I want to spend my days? Who would I want to speak for me if I can’t speak for myself? What are my end-of-life wishes?’
“None of those higher-level discussions can take place until someone can physically handle them,” emphasizes Dr. Mahoney. “The palliative care approach puts the focus back on the patient and on the family and away from the disease. It seeks to treat the person and hopefully ease suffering through the illness.”
Goals of Care Change with Time
Howard R. Epstein, MD, medical director, Care Management and Palliative Care at Regions Hospital in St. Paul, Minn., and a member of the SHM Palliative Care Task Force, notes that good palliative care incorporates ongoing discussions about patients’ and families’ goals of care. “Following diagnosis of a life-threatening illness, the initial goal might be ‘I want to be cured,’ ” he says. “But, if the disease progresses, then you need to have another discussion about goals of care. Hopefully, this is part of the process all along.”
Dr. Epstein participated in a particularly memorable case last fall, consulting with a patient who had metastatic renal cancer. Surgery had left him with an abdominal abscess, which surgeons were proposing to address with another procedure in order to prevent a potentially fatal infection. The palliative care team was called in to help Mr. A, who was only 50, decide on a care plan. During the care conference, says Dr. Epstein, Mr. A was alert and joking with his wife and indicated that he would rather go home with hospice care than undergo another surgery.
The team asked Mr. A about his goals. “He didn’t know how much time he had left,” recalls Dr. Epstein, “although he had a specific goal in mind: One of his four sons was getting married, and he wanted to be there for that. They were a very close-knit family.” Mr. A had been intensely engaged as a father all through his sons’ school years. They ranged in age from 19 to 30, and Mr. A was determined to remain close with them throughout his dying process.
The care team facilitated his return home with a PCA pump for pain and a link with a visiting hospice nurse and social worker. The case was followed by a reporter from the St. Paul Pioneer Press, and it was in those articles that Dr. Epstein learned more of Mr. A’s story. For instance, extended family members were pitching in to remodel the house; Mrs. A would have to sell it to cover her husband’s medical bills after he died. The engaged son later had to tell his father that his fiancée had canceled the wedding. Mr. A was able to allay his son’s guilt and fear about the canceled wedding and to be the kind of supportive father he had always been.
Because his goal of living until the wedding had changed, Mr. A was then able to focus on his other goal: having family with him as he died at home. And, indeed, Mr. A died a peaceful death a few weeks later surrounded by his whole family.
A Ship without a Captain
Pediatric hospitalists who handle palliative care recognize that, unlike adults’ end-of-life trajectories, which are usually a straight line, the trajectories of children with complex medical conditions tend to be more erratic between diagnosis and cure or death. As a result, their families spend a longer time relating to the medical system. The job of the palliative care team is to acknowledge the family’s experience and reframe that experience into a more egalitarian and satisfying one, including a comprehensive plan of care, says Margaret Hood, MD, senior pediatric hospitalist at MultiCare’s Mary Bridge Children’s Hospital in Tacoma, Wash. Thus, the interdisciplinary team at Mary Bridge meets with the family around a round table, where everyone’s input is given equal respect and weight.
Dr. Hood recalls one case that was brought to her attention by a social worker. Amy (not her real name) had been born prematurely and had endured many medical problems in her first four years. Then, at age four, she started walking and talking; by age seven, she was reading at the fifth grade level. From ages seven to 10, Amy had minor problems, but she began deteriorating at age 10, when it was found that she had mitochondrial disease. The family had taken her to many specialists without any resolution to her problem and had been charging medical treatments to their credit cards. The social worker was concerned that the family would be devastated by bankruptcy.
The palliative care team organized a care conference attended by Amy’s primary care physician, palliative care team members, and other specialists. Although the care conference resulted in small adjustments to her care plan—a change in medication and the addition of one diagnostic test—the true change came when Amy’s mother turned to Dr. Hood and said, “You know, I thought you’d given up on us.”
That’s when it occurred to Dr. Hood that families like these, visiting specialist after specialist for their child’s complex medical conditions, are “on ‘a ship without a captain.’ Whether or not their children have life-limiting illnesses, they need a captain of the ship to help them navigate their journey,” she says.
Amy’s mother had been under the impression that the physicians were telling her there was nothing else to hope for. “You don’t give up hope,” asserts Dr. Hood. “You just change what you’re hoping for.”
Amy died three months after the palliative care conference, but took a Make-A-Wish Foundation trip to Disneyland and celebrated Christmas at home with her family. Her last wish, after Christmas, was to avoid re-entering the hospital, and this was honored as well.
There May Be More Time to Live
Attention to nuances embedded in patients’ stated wishes can sometimes result in a reversal of expectations about end of life. Stephanie Grossman, MD, assistant professor of medicine and co-director of the Palliative Care Program for Emory University Hospital and Emory Crawford Long Hospital in Atlanta, was called by the hospitalist service last year to help facilitate transfer of a patient to hospice care.
In her 70s, the active woman had come to the hospital because a tumor mass was eroding through her breast tissue. The woman was avoiding treatment, including a biopsy, and appeared to be resolved to her fate. Based on her conversation with the emergency department (ED) attending, hospice was discussed and recommended; the patient was admitted primarily for IV antibiotics and care of her wound. In discussing goals of care with the patient, however, Dr. Grossman was able to elicit her reasons for refusing treatment. Ten years earlier, the patient had watched her daughter suffer with aggressive chemotherapy and radiation for her breast cancer. She told Dr. Grossman, “I’ve lived my life; I don’t want to go through all that.”
Knowing that breast cancer treatments have evolved in the past decade, Dr. Grossman asked the woman whether she would agree to a consultation with an oncologist to find out about less toxic treatment, including hormonal therapy. Subsequently, the patient decided to undergo a lumpectomy to increase her options. Dr. Grossman also prescribed a mild pain reliever for the woman, who had expressed fears about becoming addicted to pain medication (a common misperception in elderly patients). Upon discharge, the patient was feeling better physically, and she was optimistic about her future.
Despite the perceptions of the ED staff, the patient had not been hospice-appropriate. “No one had ever offered her the alternatives. In her mind, she saw chemotherapy as this terrible thing, and she just didn’t want to have that,” says Dr. Grossman. “So by listening to her we found out why she didn’t want chemotherapy, and we were able to encourage her to talk with the oncologist and the surgeon.”
I’m Afraid of What Comes after This Life
“Sometimes you find that patients and families are making decisions purely in a spiritual context,” notes Dr. Mahoney. “Until you know that, you can deliver clear and concise medical information and opinions and they won’t hear it. They may respect your opinion, but they will not take that into consideration when they’re making the decisions about themselves or a loved one because their spiritual belief system supersedes that factual information.”
Last year, Dr. Mahoney encountered a woman her late 50s with metastatic cancer. Her mother had died young of the same disease. The patient knew her disease was advanced and that she was facing the same thing her mother had faced. She, too, was leaving behind her daughters.
The patient, recalls Dr. Mahoney, had not filled out an advance directive and was having a difficult time talking with her family about her situation. It is Dr. Mahoney’s practice in such settings to ask people about their hopes and their fears, “because you can really gauge how someone sees their illness by asking those questions.”
The woman responded that she was very afraid of dying. “When I hear that answer, my next question is, ‘What do you fear? Do you fear that you might suffer?’ She said, ‘Oh no, no, I’m not afraid of that at all. Actually, I’ve sinned a lot in my life, and I’m afraid of what comes after this life.’ ”
Realizing that the woman was suffering spiritually, Dr. Mahoney called in her team’s chaplain to meet with the patient. During that meeting, the patient revealed to Chaplain Sandra Schaap that she had been the one to remove her mother from life support (her mother had not left an advance directive either). She was plagued by the fear of how she would be judged for that act. The chaplain was able to offer some comfort by sharing a benediction, which stated (among other things) that Christ would complete what we have left undone in this life.
“That conversation helped the patient see that she needed to complete her own advance directive so that her daughters wouldn’t go through the same thing that she had with her own mother,” says Dr. Mahoney.
Although Dr. Mahoney did not see the woman again, “I think we certainly set the framework for her and her family to be able to cope with what was coming. In the traditional medical model of disease treatment, I’m not sure that kind of detail would have come out. This woman would have left the hospital still carrying around that burden and [would have] had a very different life from that point,” she says.
“Every patient and family has a story of their illness and how it has impacted their lives,” Dr. Mahoney emphasizes. “Many times people are in the hospital for an acute problem, but they’ve suffered with an illness for years. There is a real opportunity to allow patients and families to tell their stories. People are often relieved when someone listens and can help put things in perspective. Palliative care specialists, by actively listening to patient and family concerns, can help relieve suffering on a physical, spiritual, and emotional level even when cure is not possible.” TH
In this issue Gretchen Henkel also writes about hospitalists who are overcommitted.
- Center to Advance Palliative Care. The case for hospital-based palliative care. Available at: www.capc.org/building-a-hospital-based-palliative-care-program/case/support-from-capc/capc_publications/making-the-case.pdf. Accessed on February 20, 2007.