How early, whole-person palliative care can complement disease-directed treatment by addressing symptoms, quality of life, advance care planning, and the emotional, social, and spiritual needs of patients with serious illness.
For many patients and healthcare providers, conversations around palliative care evoke feelings of fear and uncertainty. The term is notoriously misunderstood and is often associated with the belief that treatment has ended and that all hope is lost. However, the focus of palliative care is not losing hope, but rather adding support and providing comfort. The word ‘palliate’ comes from the Latin word pallium, meaning to “cloak” or “cover”[1]. For physicians, palliative care involves managing symptoms associated with serious or chronic disease. It reflects the responsibility to cloak or shield patients from the symptoms of their condition to improve their overall quality of life. Palliative care is often misunderstood as care reserved strictly for when treatment ends. However, this care should be incorporated early in the course of any serious illness. It should not be integrated only when disease-directed treatment is no longer a viable option, but rather alongside it. Its focus should be to help patients manage their symptoms, navigate difficult decisions, and maintain quality of life.
The Integrated Health Clinic (IHC) is unique in its approach to palliative care. Pain and symptom management are discussed early, often on the very first visit. Foundational approaches to optimizing nutrition, sleep, exercise, and social life are all addressed at visit one, as important factors which contribute to overall quality of life. These important aspects of health are emphasized alongside each patient’s unique conventional oncological treatments, which often include chemotherapy, radiation, and surgery. The IHC approach includes the use of several evidence-informed integrative treatments and highlights the importance of cooperation with several other healthcare teams from an array of disciplines. It involves creating advance care plans, addressing psychological aspects of disease, and navigating end-of-life conversations. This approach to palliative care reflects the original meaning of pallium – surrounding patients with the support, comfort, and care needed to navigate their journey.
Understanding Palliative Care
Palliative care begins with recognizing and understanding the impact of serious illness. The need for palliative care expands beyond just cancer – it includes conditions such as congestive heart failure, chronic obstructive pulmonary disease, pulmonary fibrosis, late-stage renal disease, and ALS. These serious illnesses are conditions that carry a high risk of mortality and significantly affect quality of life, daily functioning, and caregiver burden[2]. The World Health Organization defines palliative care as “specialized medical care that aims to optimize the quality of life and alleviate the suffering of patients”[3]. Although optimizing quality of life and alleviating suffering is essential to providing proper care, statistics show us that only 14% of people worldwide that need palliative care receive it[4]. Knowing how and when to integrate palliative care helps to restore a greater sense of function, comfort, and control, creating a meaningful difference in patients’ lives.
Why Early Palliative Care Matters
Knowing when to discuss palliative care matters. Early delivery reduces unnecessary hospital admissions and medical interventions and improves the quality of life of the patients who receive it[5]. Early palliative care has even been associated with a survival benefit in patients with advanced cancer[6]. Many patients with serious illness seek comprehensive approaches that include both conventional disease-directed therapies and integrative support. When coordinated, these approaches support patients in living a fuller, more comfortable life. Patients need practitioners who can provide these therapies effectively and in a timely manner. Due to the misunderstanding surrounding palliative care, educational opportunities on the topic are scarce[7] . In fact, the field of palliative care has considered rebranding this term to make patients more receptive and doctors more likely to recommend it earlier along in the disease trajectory. When practitioners take the time to understand the true meaning of palliative care and the positive ways in which it can affect their patients, the entire team benefits.
“It is not the goal of the palliative care team to redirect the rain—some storms cannot be avoided. Instead, they are the ones offering the person a raincoat.”
Working Together
Palliative care addresses the physical, psychosocial, and spiritual needs of patients with serious illness and uses an inter-professional team approach to do so. Naturopathic and medical oncologists, primary care MDs and NDs, nurse practitioners, and many other professionals all help to create the entire fabric of healthcare providers that are involved in the care of the seriously ill. Each member of the healthcare team contributes their own expertise, and patients benefit most when care is coordinated rather than delivered in isolation. Great palliative care comes from great assessment, great management, and the confidence to coordinate with others.
Advance Care Planning
Along with managing signs and symptoms of the disease process, it becomes increasingly important to formalize an advance care plan. Advance care planning allows patients to communicate what matters most to them before they become unable to speak for themselves. It is important to approach the topic with open-ended questions to fully appreciate both the patient’s understanding of their condition and their desires as they continue through the disease trajectory. Meaningful conversations should explore the patient’s goals, fears, values, and cultural beliefs. Conversations should be approached with grace, and emotions should be managed with empathy. Taking the time to understand each patient’s unique goals and wishes helps to provide personalized, high-quality palliative care.
Once the topic has been breached, an assessment must follow. Assessment of symptom onset, quality, severity, and provoking and relieving factors allows for a deeper understanding of the individual and which treatments are most critical for them. It is imperative to thoroughly assess physical symptoms, functional status, and quality of life. Validated symptoms and functional assessment tools help to provide a standardized reflection of clinical status. Patients will need to learn about medical procedures that they may or may not be offered, think about what resonates with them, and ask questions if they are unsure. Often, patients will need to choose their substitute decision maker should they become unable to make decisions. Just as they should have a will, all adults should also have an advance care plan.
Addressing Emotional and Spiritual Aspects of Care
It is important to address the emotional and spiritual aspects of palliative care. Emotional distress – depression, anxiety, insomnia, or a combination thereof – is common among people living with serious disease. A team of social workers, psychologists, and psychiatrists may need to be involved. Standardized assessment tools, such as the PHQ-9 or the GAD-7, help screen and assess the psychological health or distress of each patient. Although addressing emotional and spiritual aspects of palliative care is challenging, it is a fundamental aspect of compassionate patient and family-centered palliative care. Most patients eventually seek meaning and purpose in their lives and begin to consider these concepts through a new lens. Spirituality and religion are expressed through beliefs, values, traditions, and cultural practices, and these must be respected and acknowledged in palliative care.
Referral for Care in Hospice
As the patient nears the end of life, this is when the most meticulous and comprehensive assessments of their physical, social, psychological, cultural, and spiritual symptoms should be completed. The timely communication of preferences and plans for the location of end-of-life care is critical. Conversations about the best location for end-of-life care are ideally reviewed as part of a complete advance care plan. Hospice admission is typically considered for a patient’s final weeks or short months and becomes appropriate when the focus of care shifts primarily toward comfort and quality of life, rather than disease-directed treatment. Hospice provides a home-like environment for a patient who chooses hospice for end-of-life care, does not require hospital-based treatments, and for patients whose care needs are too difficult to manage in their homes. This transition of care allows both the patient and their caregivers to rest.
Caring for the Caregiver
Lastly, to provide good care to their patients, practitioners must also take good care of themselves. Compassion fatigue and burnout are common among those caring for patients with serious illness. Each practitioner should allow themselves to feel the emotions and to release them. Reflective practice, supportive colleagues, healthy boundaries, and opportunities to process grief are essential for sustaining compassionate care long-term. An acceptance of the thankful appreciation received from patients and family members creates the fuel to continue the work. When caregivers have adequate support, both patient care and patient outcomes improve.
In closing, palliative care can comprise some of the most important work a physician provides in their practice. A wonderful analogy provided by Dr. Joseph McCollum describes the patient as a person standing in the pouring rain without cover. With disease-directed treatments, the medical oncologist or naturopathic oncologist will attempt to alter the weather. However, it is not the goal of the palliative care team to redirect the rain – some storms cannot be avoided. Instead, they are the ones offering the person a raincoat. Their goal is to cloak the patient from the burdens of their illness. As patients attempt to navigate the weather, it is their palliative care team who share a raincoat and offer protection from the storm.
