Anne Kelemen

Psychosocial needs and interventions for heart failure patients and families receiving palliative care support: a systematic review

Although diseases of the heart are the leading cause of death in the USA, palliative care research has largely focused on populations of cancer patients. However, a diagnosis of heart failure differs substantially than that of cancer. They differ in terms of signs and symptoms, disease trajectories, treatment options, stigma, and prognosis. Additionally, the populations affected by these differing illnesses are also unique in a number of fundamental ways. Based on these differences, it is reasonable to hypothesize that palliative care patients with heart failure, and their families, have a distinct set of psychosocial needs. The purpose of this review is to describe the psychosocial needs of palliative care heart failure patients, and their families, as well as the interventions that address those needs. Six electronic databases were searched in June 2016 resulting in 962 identified abstracts. After removal of 388 duplicates, 574 abstracts were screened based on the following criteria: (1) available in English, (2) peer-reviewed, (3) empirical data reported, (4) patient receiving palliative or hospice care, and (5) measured psychosocial needs of heart failure patients and/or their family caregivers. After screening 574 abstracts and conducting a full-text review of 150 articles, a total of 17 studies were identified in our review. Only three intervention studies were identified, two of which evaluated the impact of palliative care over usual care. The remaining study was a clinical trial of a psycho-educational support intervention, which failed to demonstrate beneficial outcomes. Heart failure patients and their family caregivers receiving palliative or hospice care have unique psychosocial needs that are largely unexamined by previous research. The need for further research is discussed.

Choosing Words Wisely in Communication With Patients With Heart Failure and Families.

The complex and often unpredictable course of heart failure (HF) provides many opportunities for communication between clinicians and patients about important subjects as advance care planning, disease state education, therapeutic options and limitations, and end-of-life care. Studies of patients with HF demonstrate that, when engaging in such complex communication, specific language matters in patient experience and in shared decision-making with providers. To date, clinical reports have outlined useful frameworks for communication with patients with HF but have not yet broached specific language crucial to furthering whole person care, particularly in the complex and emotional realm of advancing disease and transitions to end-of-life care. In this work, the investigators unpack language commonly used in advanced HF care and provide explicit suggestions to better provide such pivotal communication. In conclusion, specific phrasing may significantly impact patient experiences and outcomes. Communication that focuses on the disease itself and the therapy or intervention in question may help remove the patient from potential negative emotions, thus facilitating more objective shared decision-making with the clinician.

Vote for Me

Space was dim and cramped around the bed of the semiprivate room where we first encountered our patient, whom we’ll call Mr Robinson. Although it was nearly midday, curtains drawn haphazardly across the room blocked the late spring sunlight of Washington, DC. Mr Robinson had been poking through his lunch, disinterested and distracted. Suddenly becoming animated, he seemed to welcome the visit. He sat straight up, ran fingers through his usually slicked-back silver hair, and extended a hand. The grip was firm and earnest. We introduced ourselves as members of the palliative care team (H.G., A.K.) and the attending heart failure specialist (G.R.). Palliative care, we explained, is interdisciplinary care that focuses on symptom management, clarifying goals of care, and emotional and spiritual support for patients living with a serious progressive illness, like Mr Robinson’s advanced heart failure. We explained how, at our institution, the palliative care team meets all patients being evaluated for a left ventricular assist device as destination therapy (LVAD-DT), collaborating closely with the advanced heart failure team. This sounded agreeable to Mr Robinson; we proceeded with our assessment. As the visit was ending, Mr Robinson pointed a shaky finger in our direction. “Now listen carefully, please. I hope each of you vote for me.” We looked at each other, puzzled. “Some of the cardiologists explained to me earlier. The whole group is thinking about whether I’m a good candidate for the LVAD. I want you to know I’ll do whatever is necessary to get the LVAD. I’m following doctors’ instructions. I’m monitoring my fluid intake. I’m eating more so I can gain weight and get stronger. I’m a good candidate. And when you meet to decide, I want to know that I have your vote.” Newly developed medical technology may aim to lengthen life span and improve function or quality of life, but communication remains at the epicenter of effective health care delivery. How we say it matters as much as what we do.1 The weight of certain commonly used phrases continues to be reexamined by thoughtful clinicians. To talk of “withdrawing care” may be perceived as abandonment, when we really mean to discuss withdrawing specific technologies that are sustaining one or more organs.2 To tell a patient he is “failing chemotherapy” is not rational—the therapy, not the person, is ineffective.3 Similarly, when novel therapies are not appropriate for all individuals, medical culture may have slipped into another misapplied semantic of selectiveness. Considering the history of modern medicine, the way we clinically apply concepts of “candidacy” to patients appears relatively recent. In Aequanimitas, Sir William Osler employs the word “candidate” once, and then only to refer to selection of surgeons by a Canadian medical board.4 A brief MEDLINE search finds the earliest application of “candidate” to patients in 1954, in reference to patients undergoing a procedure to alleviate otosclerosis, with gradual increase in use through recent decades.5 In this case, Mr Robinson had understandably interpreted well-meaning conversations about his “eligibility” or “candidacy” for the LVAD as would be determined by a “selection committee.” He had concluded there would be a “vote.” Throughout his life, he had been evaluated by many “selection committees” and was always a “winner.” In high school he was evaluated and recruited to play college football. He later was a “good candidate” for the Marines and served his country. Failure, or not being selected by a “committee,” was something that happened to other people, not Mr Robinson. Like any hardworking candidate, he wanted to be chosen, and he sought the reassurance of his electorate, so to speak. Unfortunately, despite his insistent vigor, Mr Robinson was physically frail, cachectic, and deconditioned. Progressive renal failure was complicating his stage D congestive heart failure. When we returned late in the day, he had already learned from other physicians that he would not be receiving the LVAD. He was noticeably baffled, even angry. We tried to explain that this decision was not about his willpower or his personality—it was about trying to provide the care that seemed best and safest for him, given his clinical circumstances. He insisted he would work harder at rehabilitating his body and gaining muscle mass, as if his efforts could overcome the steady fade of his heart muscle. “I thought I was convincing,” he said. “I thought they would vote for me.” He looked dejected staring at the floor. We explained that all his care providers vote for him, in that we all wanted him to get the best and most appropriate care given these circumstances. We were in his corner, even if LVAD implantation was not an option. Despite these reassurances, he still exuded a sense of personal failure, as if the burden was his alone to wrestle his weary body into strong enough condition to endure a sternotomy and all of its potential complications. Mr Robinson was discharged home a few days later but was readmitted within the month, again in florid cardiogenic shock, this time with acutely worsening kidney failure. His continuous milrinone infusion was increased to a maximum rate. Ultrafiltration was initiated in hopes of sipping off excess fluid. Gingerly, without commitment or enthusiasm, conversations of permanent hemodialysis were introduced. But Mr Robinson’s blood pressure remained tenuous at best, and the consulting nephrologist was not optimistic. About a week later, with no sign of clinical improvement, the family meeting was scheduled to discuss A PIECE OF MY MIND

Therapy First, Not the Patient?

This did not go well. We met Mr. Quincy in his cramped hospital room where he lay curled underneath musty wasabi green blankets. His daughter and her husband were already there. So was the cardiologist, Dr. Frederick, who had asked us, members of our hospital’s palliative care team, to join the family meeting that was about to begin. Our task was to help break the “bad news”: Mr. Quincy’s heart function had deteriorated significantly to an ejection fraction of 15%. He was weak, emaciated, and exhausted. He struggled with substance use disorder, a long history of depression, and was recently in the hospital with suicidal ideations. Before starting this downward journey of congestive heart failure, he felt like “a million bucks”; however, now he felt like one nickel. There was little left to offer in terms of curative disease-modifying therapy. “Thank you all for being here,” said Dr. Frederick. “Mr. Quincy, I want to talk to you about your heart failure. You’ve been here in the hospital now several weeks and we’ve been trying to get off this fluid, in your legs, in your lungs.” Mr. Quincy’s daughter nodded while he continued. “We’ve been changing your heart medications to make that easier. And this [he pointed to the IV pole] has been doing as much as it can to help your heart ‘squeeze’ better, but it’s not enough.” Hanging from the IV pole was a small translucent bag of the drug, milrinone, continuously dripping into Mr. Quincy to promote cardiac function. In our experiences with the heart failure specialist team it was common to see clinicians and patients alike describe the inotrope drug’s effect through hand motions: first a pulsatile grip around an imaginary basketball (without the milrinone) then again as if gripping an imaginary softball (with the milrinone). Mr. Quincy had been prescribed continuous milrinone at home for over 6 months now. Knowing the median extension of life with continuous milrinone is only 9 months from the time of drug initiation, we were not surprised with his dramatic decline. “I know I feel better than when I got here, doc,” said Mr. Quincy. “He’s going to do a better job with his diet from now on, right Dad?” added the daughter.

Reading the Room: Lessons on Holding Space and Presence

The following is a reflection on a patient interaction that draws attention to presence and holding space.

Poor prognostication: hidden meanings in word choices

Effective communication of prognosis to patients, families and other medical providers is critical for informed decision-making, particularly for patients at end of life. Research shows that patients who have a realistic sense of their life expectancy tend to approach treatment differently than those who do not.1 ,2 Despite worry among clinicians that providing realistic information will ‘take away hope’, both patients and families report better psychological outcomes as the result of prognosis discussions.3 ,4 Nevertheless, barriers persist. Aside from the practical difficulty of ascertaining a patients life expectancy, the absence of a standardised language to express prognostic information can further obscure what is already uncertain. For example, the adjective grave —defined by Merriam-Webster as ‘very serious or dangerous to life’—conveys urgency but does not provide a specific time frame.5 Likewise, the phrase ‘poor prognosis’, used frequently in clinical documentation and in conversation with patients, can vary widely in meaning among medical providers. Even ‘hospice eligible’, which typically indicates a prognosis of 6 months or less, often resists such universal interpretation. We became interested in how clinicians themselves understand language employed …