Offering patients palliative care can often be difficult for physicians. For example, as a cardiologist I often struggle with when to refer patients with heart failure to palliative care. We try to justify to ourselves that there is another option we can pursue before we call it quits — as if offering our patients palliative care is giving up. However, it is not giving up. Our struggle with palliative care may stem from the misperception that we are giving up or offering the patient end-of-life care. In fact, palliative care is often misunderstood as hospice care.1
However, recent data over the last 10 years, particularly in oncology, have shown that palliative care is not necessarily the same as end-of-life care. It can be a critical adjunct to improving patient outcomes including survival and quality of life and may also help reduce the cost of care.1 Thus it is no surprise that in the latest updated guidelines for pulmonary arterial hypertension (PAH) published by CHEST that recommendations in favor of early referral to palliative care are now included along with usual therapy. 2
This is a move toward improving the quality of care we deliver by refocusing the goals of care to improving quality of life and patient symptoms.1 It is not a replacement of the patient’s usual care, but rather the addition of an integrated team that focuses on medically appropriate goal setting, truthful and transparent communication, and most importantly, on symptom control which consequently helps patients feel better.1
I recall a middle-aged man with end-stage pulmonary fibrosis who described to me his pain as if he was always drowning. Despite chronic oxygen therapy, anxiolytics, and opiates, we could not get him to feel better — and the sensation of drowning was torture. He was miserable and we were horrified that we could not help him. Finally, we consulted our hospital’s palliative care service. They were able to make him feel better by titrating his doses of his anxiolytics and opiates to doses that made us, his physicians, uncomfortable.
The reality is that this is common practice in our current healthcare system. We often cannot meet the needs of patients with advanced, terminal, or incurable illnesses because of fears, misconceptions, and personal preferences.1
In fact, despite this experience, when faced with another similar patient a few years later, I was late again to the table with palliative care. I did not know when to get them involved and aimed to purse all therapeutic avenues before the thought of referring the patient to palliative care occurred to me. Again, my misconception that palliative care was end-of-life care or hospice care, or that I was somehow giving up by contacting my palliative care colleagues, prevented me from providing the most comprehensive and effective care possible.
Consider, for example, a 68-year-old man with severe pulmonary hypertension and World Health Organization functional class (WHO-FC) III symptoms with several years of worsening shortness of breath and dyspnea on exertion when walking from his bed to the bathroom, just a few feet away. His oxygen saturation on room air at rest is 92% and he has a right ventricular heave on physical examination. Echocardiography reveals a left ventricular ejection fraction of 65% with moderate right ventricular hypertrophy and a pulmonary artery systolic pressure of 68 mm Hg with a dilated inferior vena cava and no collapse. You send the patient for a right heart catheterization which confirms a markedly elevated mean pulmonary artery pressure of 70 mm Hg with a normal wedge and vasoreactivity. What should you do next?
The reflex response, and correct clinical algorithm, is that he should be tried on a calcium channel blocker and monitored closely for disease progression or response to the calcium channel blocker. Should therapy with calcium channel blockers fail, then we all know to move on to combination therapy with ambrisentan and tadalafil which has a class I indication for patients with WHO-FC III.3 When should we refer this patient to palliative care? When the diagnosis is first made, when calcium channel blocker therapy fails, or if combination therapy fails?
According to the updated CHEST guidelines on PAH, there is a consensus recommendation that patients with PAH be referred for palliative care at the time that the diagnosis is confirmed because of the “clearly documented benefits to patients and outcomes.”2
Thus, the latest guidelines remind us that palliative care should be consulted earlier, at the time of diagnosis rather than late in the disease and treatment process. Our inability to move past our misconceptions and personal biases not only denies potential life-improving care to patients, but also in some cases life-prolonging interventions. It is also costing the healthcare system, patients, and their families an unnecessary fortune. Although there are no PAH-specific trials to support these recommendations, the consensus is based on evidence that has shown that palliative care in patients with metastatic cancers can live longer with improved quality of life at a lower cost than with standard oncologic care alone.1 This may not be a substitute for randomized clinical data, but it is the best we have at this time and enough to challenge the status quo and get us thinking about palliative care earlier in our patients’ treatment plans.
1. Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012;30(8):880-887.
2. Klinger JR, Elliott CG, Levine DJ, et al. Therapy for pulmonary arterial hypertension in adults: update of the CHEST guideline and expert panel report. CHEST. 2019;155(3):565-586.
3. Gaile N, Humbert M, Vachiery JL, et al; for the ESC Scientific Document Group. 2015 ESC/ERS guidelines for the diagnosis and treatment of pulmonary hypertension: the Joint Task Force for the Diagnosis and Treatment of Pulmonary Hypertension of the European Society of Cardiology (ESC) and the European Respiratory Society (ERS): endorsed by: Association for European Paediatric and Congenital Cardiology (AEPC), International Society for Heart and Lung Transplantation (ISHLT). Eur Heart J. 2016;37(1):67-119.