A study being presented at the 51st ASH Annual Meeting, however, has found that patients with hematologic malignancies who participate in advanced care planning are no more likely to have psychosocial problems than their counterparts who lack an advanced care plan.
New Orleans, LA — Advanced care planning has become a controversial issue. Opponents of healthcare insurance reform have misbranded end-of-life discussions as “death panels.” The Catholic Church recently weighed in, with the U.S. Conference of Bishops ruling that Catholic hospitals should ignore advanced care directives that refuse medically assisted nutrition and hydration for patients who are not “imminently dying.” Some medical and psychological experts oppose advanced care planning out of concerns that discussing death will increase stress levels in patients with a terminal illness. A study being presented at the 51st ASH Annual Meeting, however, has found that patients with hematologic malignancies who participate in advanced care planning are no more likely to have psychosocial problems than their counterparts who lack an advanced care plan.
Only 10% of Americans have an advanced care plan, a document that address end-of-life choices and typically includes a living will and designates a healthcare proxy (the person authorized to make healthcare choices for the patient should he or she become incapacitated). An advanced care plan might describe the patient’s wishes regarding resuscitation or other life-sustaining measures.
According to researchers from the University of Nebraska Medical Center in Omaha and Fred Hutchinson Cancer Research Center in Seattle, previous studies suggest only 50% of patients with a hematologic cancer create an advanced care plan prior to a high-risk procedure like stem cell transplantation. Earlier data also show that those most likely to die are least likely to have a plan in place.
Researchers analyzed data for 293 patients with blood cancers in the HEMA-COMM (Hematology Communications) study, which evaluated communication between physicians and their patients. Patients were considered to have an advanced care plan if they had a living will and a designated healthcare proxy; those lacking one or both of these provisions were considered not to have an advanced care plan. Based on self-reporting, 149 (51%) were found to have an advanced care plan. Patients with advanced care plans tended to be older (a median of 56 years vs 52 years for those without plans) and have higher incomes. They were more likely to have a leukemia or myelodysplastic syndrome diagnosis and to have undergone prior cancer treatment.
In addition to comparing the psychosocial wellbeing (ie, coping, depression/anxiety, denial, social support, and quality of life) of patients with and without advanced care plans, the retrospective study also sought to uncover ways to encourage patients to engage in advanced care planning. Depression and anxiety were measured with the Hospital Anxiety and Depression Scale (HADS), coping was assessed with the BRIEF-COPE scale, social support was evaluated using the MOS-SS scale, and quality of life was assessed with the MOS-SF36 scale. Researchers also looked at denial.
Psychosocial wellbeing was found to be relatively equal between the two groups, except for coping. Patients that had advanced care plans were more likely to practice problem-focused coping methods, such as taking advice, seeking moral support from or talking about their feelings with others, maintaining a positive outlook, and actively working to address the problem. The authors defined “problem-focused coping” as actions taken to alter the source of stress, which they said “predominates when a person feels that something constructive can be done to affect the outcome of events.” Patients without advanced care plans often resorted to emotion-focused coping patterns, including denial, behavioral or mental disengagement, turning to religion, self-blame, and substance abuse.
According to life expectancy estimates from their physicians and cure rates, patients with a worse estimated prognosis were more likely to have an advanced care plan and discuss end-of-life wishes with a physician. Nearly one-third (30%) of those with a plan discussed their end-of-life wishes with a physician, 62% discussed wishes for life support use with family, and 8% did not discuss their wishes with anyone.
The researchers concluded that patients with problem-focused coping patterns were more likely to engage in advanced care planning, possibly reflecting a “realistic or pragmatic view of clinical outcomes.” They may be more likely to recognize the need for an advanced care plan because of an unfavorable prognosis.
Lead author Fausto R. Loberiza Jr, MD, associate professor at the University of Nebraska Medical Center, believes this practicality may be one avenue for increasing patient participation in advanced care planning. In a press release, Dr Loberiza said, “In order to increase engagement in advanced care planning, it is important to focus on the practical importance of advanced care planning regardless of prognosis, and de-emphasize the emotional aspects of advanced care planning.” He suggested such an approach might be more appealing to patients “regardless of coping style.” He added that advanced care planning is important for all individuals. “We hope that more people engage in this important process,” he said.