The World Health Organization defines palliative care as care [T]hat improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual (1). Medical care is focused on symptom relief and maximizing patient function, without necessarily impacting the natural history of the underlying illness. The unit of care is defined as the patients, along with their loved ones, and bereavement support is integral to its mission. Palliative care is interdisciplinary, involving not only nurses and physicians but also chaplains, psychologists, social workers, and speech, physical, occupational and other therapists. Although palliative care has historic roots in the terminal care of dying cancer patients, its scope encompasses a wide variety of patients with non-malignant diseases. These include dementia and other neurodegenerative disorders; advanced organ disease such as lung, heart, liver and kidney failure; and critically ill patients in medical, neurological, surgical and trauma critical care units (2, 3). Ideally, palliative care is provided to patients with severe illnesses early in the course of their disease, alongside disease-modifying or curative therapy. As an illness progresses, and as disease-modifying or even life-prolonging interventions become less available, a patient's entire care may become palliative focused.
There are numerous online resources available to assist palliative care clinicians. This paper surveys available resources, focusing on the wide range of websites available to help clinicians research clinical questions, share institutional wisdom, exchange educational resources, network with colleagues, and keep up to date with emerging research.
Abstract Background Idiopathic pulmonary fibrosis (IPF) is a fatal disease that results in poor quality of life due to progressive respiratory symptoms, anxiety, and depression. Palliative care improves quality of life and survival in other progressive diseases. No randomized controlled trials have investigated the impact of palliative care on quality of life, anxiety, or depression in IPF. Methods We conducted a randomized, controlled, pilot study to assess the feasibility of measuring the effect of a palliative care clinic referral on quality of life, anxiety, and depression in IPF. Patients were randomized to usual care (UC) or usual care + palliative care (UC + PC) with routine pulmonary follow up at 3 and 6 months. The UC + PC group received a minimum of one PC clinic visit. Primary outcome was change from baseline in quality of life, anxiety, and depression as measured by the St. George’s Respiratory Questionnaire (SGRQ), the Hospital Anxiety and Depression Index (HADS), and the Patient Health Questionnaire (PHQ-9) at 6 months. Results Twenty-two patients were randomized between September 2017 through July 2018; 11 to UC and 11 to UC + PC. There was no difference in the change in SGRQ score at 3 months or 6 months, however, the symptom score trended towards a significant worsening for UC + PC at both 3 and 6 months (mean change at 3 months for UC and UC + PC was − 7.8 and + 10.7, respectively, p = 0.066; mean change at 6 months for UC and UC + PC was − 6.0 and + 4.6, respectively, p = 0.055). There was no difference in the change in HADS anxiety or depression scores. There was a significant transient worsening in PHQ-9 scores for UC + PC at 3 months (UC: -1.6, UC + PC: + 0.9, p = 0.008); this effect did not persist at 6 months. Conclusion This pilot study demonstrated that a randomized controlled trial of palliative care in idiopathic pulmonary fibrosis patients is feasible. Receiving palliative care did not lead to improved quality of life, anxiety, or depression compared to usual care after 6 months. Patients in the UC + PC group trended towards worsening symptoms and a small but statistically significant transient worsening in depression. These findings should be interpreted with caution, and need to be evaluated in adequately powered clinical trials. NCT03981406, June 10, 2019, retrospectively registered.
The World Health Organization defines palliative care as an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual. Palliative care is focused on symptom relief and maximizing function, without necessarily impacting the natural history of the underlying illness. Bereavement support is integral to its mission as it views the patient and his or her loved ones as a unit of care. Palliative care is interdisciplinary, involving not only nurses and physicians, but chaplains, psychologists, social workers, and speech, physical, occupational, and other therapists. While palliative care has historic roots in the terminal care of cancer patients, its scope encompasses a wide variety of patients with non-malignant diseases. These include neurodegenerative disorders; advanced organ disease; and patients in critical care units. Ideally, palliative care is provided to patients with severe illnesses early in the course of their disease, alongside disease-modifying or curative therapy. As an illness progresses, and as disease-modifying or even life-prolonging interventions become less available, a patient's entire care may become palliative-focused. While much of the care of patients with life-threatening illness can be described as palliative, many patients will not require specialist palliative care, and basic competency in palliative care is important for clinicians across a variety of specialties and practice types.
