5 Tips: Talking with palliative patients

There is a clear need for community pharmacists to be engaged in palliative care given the shift of palliative care from hospitals to the community, and the estimate that 90% of all Canadian deaths are due to chronic illness.1,2 The term “palliative care” has historically been stigmatized by a focus on end stages of life; however, its definition is much broader. Palliative care is an interdisciplinary and holistic approach to care provided any time after a person is diagnosed with a life-limiting illness. It is not exclusive for those with cancer. All patients with an incurable illness, such as chronic cardiovascular disease, chronic obstructive pulmonary disease, chronic kidney disease, multiple sclerosis or Parkinson’s disease, should have access to palliative care.3 The goal is to improve quality of life for patients and families through prevention and relief of suffering extending beyond physical symptoms, encompassing psychosocial, practical and spiritual needs.1,3,4 Early access to palliative care can improve quality of life, reduce depression, decrease symptoms, extend survival and enhance end-of-life outcomes.1,3,5-7 As accessible healthcare providers with unique drug expertise, pharmacists are well positioned to optimize pharmacotherapy for those with a terminal illness.8 Effective communication can be challenging in the palliative environment and hence we offer these five tips.1. Build foundational competence in palliative careTo communicate effectively with palliative patients and care-partners, pharmacists must develop basic competence in what palliative care is, how symptoms are assessed and common pharmacotherapy options. First, we remind you that palliative care is not synonymous with end of life.1,5,7 With improvements in medical interventions and pharmacotherapy, patients with a terminal diagnosis such as cancer may live for months to years.9 Appreciating where a patient is at in their illness journey is critical to avoiding misunderstandings.Second, symptoms are subjective and experienced differently from person to person. For example, some individuals may describe “5/10 pain” as comfortable, while others say it’s intolerable. Culture, religion, relationships, family dynamics and social supports greatly impact how symptoms are experienced, discussed with others, and one’s receptiveness to pharmacotherapy.10 To assess pharmacotherapy needs for subjective symptoms, use a validated tool such as the Edmonton Symptom Assessment Scale (ESAS-r) and a structured interview exploring Symptoms, Characteristics, History, Onset/timing, Location, and Aggravating and Remitting factors (SCHOLAR).11-13Third, be familiar with pharmacotherapy agents and doses used in palliative care. Some medications have “off-label” indications and, without palliative care knowledge, a pharmacist may wrongly consider a prescription as inappropriate.14 For example, haloperidol may be prescribed for chronic nausea, but mistakenly assumed to be for psychosis or delirium, leading to confusion and miscommunication to the patient.14,15 Table 1 provides information regarding some common medications used in palliative care,15 while Box 1 lists some key palliative care resources.2. Demonstrate empathy the patient can recognizeEliciting a patient’s perceptions of their disease, prognosis and expectations from medications helps inform how to best frame information. Opening with “Can you tell me what you are hoping this medication will do for you?” or “What is your understanding of your disease at this point?” enables the pharmacist to identify misunderstandings between hopes and realistic expectations. Patients may display an array of emotions (from anger to sadness) and act in various ways (withdrawn, tearfulness, denial).16 Allow silence if needed, as a few moments of quiet will demonstrate your comfort with the patient taking their time.16 After their response, empathy can be shown using strategies from the “NURSE” tool: Naming the emotion (e.g., “I can see you are sad”), demonstrating Understanding (e.g., “I cannot imagine how difficult this must be”), offering Respect (e.g., “I am impressed with how hard you have worked to maintain your independence”), expressing Support (e.g., “I am committed to helping you and your family”) and Exploring feelings (e.g., “Tell me more about…..”).16,173. Establish trust and communicate with honestyAlthough difficult to acknowledge an advancing disease, many patients appreciate open and honest conversations. Discussing the symptoms and challenges of a terminal illness can build rapport and trust.18 When a patient’s disease has progressed or symptoms have intensified, open the conversation with a “warning shot” that acknowledges your awareness of the situation.17 For example: “I saw the doctor’s note in your records. I can appreciate how difficult that appointment must have been for you.” When the patient is ready to hear your message, be clear and jargon-free.16,17 Maintain eye contact as much as possible, minimize distractions and deliver information in a calm manner to prevent undue anxiety.16,17 Avoid euphemisms or unrealistic “sugar coating” as these strategies can lead to confusion, a breakdown in trust or a perception of disrespect. Remember, hope is not necessarily tied to cure of disease. Instead, hope can shift to goals such as good pain control or maintaining independence.164. Take time to really listenHearing the patient’s illness story provides valuable insight into the patient’s experience and allows shared control of the interaction. Active listening honours the patient’s voice, can uncover subtle details regarding the patient’s perceptions, improve comprehension of symptoms and provide insight into medication adherence.10 Comments like “I am taking too many pills” can trigger the pharmacist to explore the need to deprescribe, simplify regimens, offer compliance packaging or clarify medication-related misunderstandings. Issues that hinder acceptance of loss such as self-blame (e.g., life choices such as smoking) or guilt (e.g., impact on loved ones) are often detected with careful listening.10 Most importantly, active listening communicates compassion and allows patients and care-partners to feel validated.145. Effectively support care-partnersCare-partners are family or friends that provide treatment support to the patient, such as by managing medications and/or helping with activities of daily living.19 The workload and emotional experience of a care-partner puts them at risk of burnout and extreme grief.20 Since interactions with care-partners are frequent, pharmacists are uniquely positioned to provide education and support. For example, education that palliative care does not necessarily mean imminent death can alleviate undue anxiety.21 Conversations with a care-provider allow them to share their own experiences and how they are managing workload, stress and their own health. As appropriate, pharmacists can provide education, refer, encourage self-care and ultimately support them in the grieving process.19SummaryPharmacists have a huge opportunity to engage in palliative care for their patients with a life-limiting illness. Understanding the core principles of palliative care, empathetic and honest messaging, active listening and supporting both patients and their care-partners can enable effective communication that builds trust, demonstrates respect and potentially improves quality of life.Tara Leslie (tleslie1@ualberta.ca) is an Associate Clinical Professor at the Faculty of Pharmacy and Pharmaceutical Sciences, College of Health Sciences, University of Alberta. Vincent Ha is a Clinical Pharmacist at the Cross Cancer Institute, Albert.References:Alberta Health. Advancing palliative and end-of-life care in Alberta. Government of Alberta, November 2021. (accessed November 17, 2023).Canadian Hospice Palliative Care Association. Fact sheet: hospice palliative care in Canada. (accessed October 28, 2023).World Health Organization. Palliative care. August 5, 2020. (accessed October 3, 2023).Ong CK, Forbes D. Embracing Cicely Saunders’s concept of total pain. BMJ 2005;331:576.Radbruch L, De Lima L, Knaul F, et al. Redefining palliative care - a new consensus-based definition. J Pain Symptom Manage 2020;60(4):754-64.Nickolich MS, El-Jawahri A, Temel JS, et al. Discussing the evidence for upstream palliative care in improving outcomes in advanced cancer. Am Soc Clin Oncol Educ Book 2016;35:e534-8.Temel JS, Greer JA, Muzikansky Al, et al. Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 2010;363:733-42.Canadian Pharmacists Association. Pharmacy in Canada. February 2016. (accessed November 17, 2023).Canadian Cancer Statistics Advisory Committee in collaboration with the Canadian Cancer Society, Statistics Canada and the Public Health Agency of Canada. Canadian cancer statistics 2023. Toronto, ON. (accessed November 17, 2023).Wittenberg-Lyles E, Goldsmith J, Ferrell B, et al. Communication in palliative nursing, the comfort model. New York: Oxford; 2013.Bruera E, Kuehn N, Miller MJ, et al. The Edmonton Symptom Assessment System (ESAS): a simple method for the assessment of palliative care patients. J Palliat Care 1991;7(2):6-9.Watanabe SM, Nekolaichuk C, Beaumont C, et al. A multicenter study comparing two numerical versions of the Edmonton Symptom Assessment System in palliative care patients. J Pain Symptom Manage 2011;41(2):456-68.Yearwood C, Guirguis L, Mahmoud SH. Principles of patient assessment. In: Mahmoud SH, ed. Patient assessment in clinical pharmacy. Cham, Switzerland: Springer; 2019. p13-29.O’Connor M, Fisher C, French L, et al. Exploring the community pharmacist’s role in palliative care: focusing on the person not just the prescription. Patient Educ Couns 2011;83(3):458-64.Kwon JH, Kim MJ, Bruera S, et al. Off-label medication use in the inpatient palliative care unit. J Pain Symptom Manage 2017;54(1):46-54.Campbell TC, Carey EC, Jackson VA, et al. Discussing prognosis; balancing hope and realism. Cancer J 2010;16(5):461-6.Saraiya B, Arnold B, Tulsky JA. Communication skills for discussing treatment options when chemotherapy has failed. Cancer J 2010; 6(5):521-3.Engel M, Kars MC, Teunissen SCCM, et al. Effective communication in palliative care from the perspectives of patients and relatives: a systematic review. Palliat Support Care 2023;21(5):890-913.Alam S, Hannon B, Zimmermann C. Palliative care for family caregivers. J Clin Oncol 2020;38(9):926-36.Choi S, Seo J. Analysis of caregiver burden in palliative care: an integrated review. Nurs Forum 2019;54(2):280-90.Dionne-Odom JN, Ornstein KA, Kent EE. What do family caregivers know about palliative care? Results from a national survey. Palliat Support Care 2019;17(6):643-9.

5 Tips: Talking with palliative patients

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