Palliative Care Is About Living As Well As Possible For As Long As Possible

Before talking about palliative care, I would like to ask you to answer a few questions:

  • How do you define living well?
  • What makes life worth living?
  • What events do you look forward to?
  • Who are the most important people in your life?

These are just a few of the standard questions I ask patients and their families when I see them in my palliative care clinic. Questions like these are essential to providing high quality palliative care because they allow me to get to know my patients as people and provide me with information I need to support them in living their best life.

The heart of palliative care is honest, focused, and sometimes difficult, conversations between healthcare providers, patients and their families. In these conversations patients voice their values, hopes, fears, perceptions and expectations and healthcare providers do their best to share relevant medical information and predictions about the future, including what is possible and what is most likely to happen. In these conversations the healthcare team works to understand the patient and family’s goals and help them to make plans that reflect and support these goals while staying true to the medical facts. For example, a person with advanced PD may value travel. While it may not be safe for them to continue driving, there may be ways to continue to travel including modifying their RV to be handicapped accessible.

Palliative care is an approach to the care of patients and families affected by serious illness that aims to improve quality of life and reduce suffering by managing medical symptoms, providing psychosocial support, promoting spiritual wellbeing and developing plans for the future. Palliative care may be appropriate at any time during the course of an illness, including the time of diagnosis, and may be helpful for a wide range of diseases, including Parkinson’s disease (PD). A palliative care approach may be taken by any healthcare provider and may even be provided by community organizations such as support groups. Over the past decade, an increasing number of universities are offering outpatient palliative care clinics for patients and families affected by PD.

Palliative care is sometimes called “the best kept secret in healthcare” because it offers a powerful approach for patients and families yet is either unknown or misunderstood by both other clinicians and patients. Despite advances in medicine and society many physicians still feel that having honest conversations and talking about difficult issues will take away a patient’s hope. When done skillfully and compassionately, we’ve found that the opposite is more often the case. In fact we’ve had multiple patients and families thank us for speaking honestly with them about their health condition because it challenged them to spend more time with their families, traveling or other activities that made life worth living while they still had the chance to do it. Table 1 shows other common myths that bias people’s perceptions of palliative care.

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I hope that you are beginning to get a feel for what palliative care is and how it may be helpful for patients and families affected by PD. Before closing, I would like to briefly explore one last area of palliative care that is frequently misunderstood, namely spiritual wellbeing and the role of the chaplain. When we first started our palliative care clinic many people requested not to see the chaplain either because they were not religious or because they felt they had their religious needs well met in their church or other place of worship. When we talk about spiritual wellbeing, we are looking at spirituality in its broadest sense, including a person’s values, the ways they find meaning in the world, and the ways in which they feel connected to the universe and other people. Spiritual challenges associated with illness may include a loss of one’s sense of identity, meaninglessness, fear of death, guilt at being a burden to one’s family, anger at the unfairness of it all, isolation, grief and loss. The chaplain can help in dealing with these issues and the difficult emotions that accompany them. The chaplain (and others) may also be helpful in building resilience and finding meaning. This is yet another instance where being proactive helps promote living fully.

There were several excellent presentations by clinicians and patients at the WPC 2016. Given the steady growth in this field we have no doubts that the WPC 2019 will also have several opportunities for patients and families to learn more and explore palliative care more deeply.

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Benzi Kluger, MD, MS, spoke at the Third World Parkinson Congress in Montreal, Canada and the Fourth World Parkinson Congress in Portland, Oregon. He is currently an Associate Professor of Neurology and Psychiatry at the University of Colorado, Denver and the Director of the Neurology Supportive and Palliative Care Section.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®