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Facing the challenges of palliative care: continuity

The fifth edition of the Oxford Textbook of Palliative Medicine is dedicated to the memory of Prof Geoffrey Hanks, one of three founding editors of the textbook, who died in June 2013. With a legacy spanning almost four decades as a clinician, researcher, teacher, and editor, Geoffrey was a man of great compassion and wisdom. While we are greatly saddened by his death, we are inspired by his legacy.

The two decades since the first edition of this textbook have witnessed truly remarkable growth in palliative care. Such growth is challenging to master, and brings both uncertainties and optimism about the future. In this three-part series of articles, we’ll take a look at some of the complex and challenging issues of continuity, development, and evolution in the field of palliative care.

Palliative medicine asserts, boldly and optimistically, that even in the face of overwhelming illness, suffering can and must be relieved. This assertion is derived from a rights ethos. There may be individual barriers that patients or families bring to the clinical setting, or larger pragmatic, economic, or social reasons that make it difficult to provide palliative care, but none of these concerns undermine the duty to prioritize the relief of suffering for people with incurable illnesses and the families that support them.

The factors motivating palliative medicine practitioners are the underlying axioms of our professional endeavors. They should be clearly articulated, because they underlie the personal, professional and societal investments which address intense human suffering, in the context of both inexorably progressive illnesses, and impending death.

Care, compassion, empathy, and justice

Care is the recognition that the well-being of others is a matter of consequence. As an integral part of the human experience, it influences the nature and dynamic of interpersonal behaviours. Compassion is that aspect of care that recognizes the emotional dimension of human experience, and encompasses sympathy for another’s loss.

Empathy, the ability to perceive and understand the emotional experience of others, predicates care and compassion. In the clinical context, an empathic connection occurs when the clinician understands what their patient is experiencing, and successfully communicates that understanding. The empathic connection is often therapeutic in itself. Beyond that, it contributes to a bond which facilitates the trust necessary to forge an effective therapeutic relationship.

Care and empathy interface with the perception of justice. The claim that access to the means to relieve suffering is a human right derives from the empathic experience; i.e. that unnecessary suffering is a matter of consequence and therefore demands a constructive response.

Hands by Gaertringen. CC0 via Pixabay.
Hands by Gaertringen. CC0 via Pixabay.

Resilience

In taking on the task of palliative care, a professional caregiver willingly accepts the role as first-hand witness to physical, emotional and existential distress. Caring for people at the end of life and their families in this context day after day challenges us as professionals and individuals. Each interdisciplinary team member brings personal needs and resources to the clinical experience, and the different stressors born by members of the team can strain even the best of collaborative relationships.

Resilience is the quality that enables professional caregivers to cope and adapt, continuing to give and grow despite the suffering we dare to confront. Resilience is buffered by skills acquired through years of training, and by dedication and good intentions. As teams, resilience is the binding matrix that keeps us working constructively together despite stress, which would potentially undermine our ability to deliver care.

Common experience suggests that resilience characterizes most clinicians who choose palliative care as a career. These clinicians are driven to develop the skills and relationships that support their ability to manage suffering. Not all who work in palliative care do so by choice, however. Interns, resident staff, nursing students, junior members of the allied health team, administrative and support staffs may find themselves addressing the problems of patients with advanced illness by consignment. For those without the resilience of the clinicians who seek to specialize in palliative care, this can only be endured in an understanding and supportive environment.

The patients and families we seek to help have not chosen their fate. How they cope, or are helped to cope, hinges on both the provision of meticulous care, and the fostering of resilience in the patient and the family unit as a whole. Some patients come with rich sources of personal and family resilience. Others are overwhelmed. Competent palliative care will always seek to support adaptive coping, and psychological and spiritual healing of both patients and families.

Courage

For the incurably ill, fear may be a part of life. There is just so much to fear: death, physical distress, and dependency, as well as multiple losses: control over biologic functioning, mental faculties, potency, beauty, and future hopes.

Courage takes many forms in the lives of our patients and the families who care for them. They need courage to seek meaning in a life that is now demonstrably finite, and to savour remaining life while grieving the hopes and dreams that cannot be fulfilled. They need courage to confront difficult decisions about treatment options that have the potential to improve quality of life, but also the possibly to undermine it. For many patients, consenting to even simple interventions requires great courage, and the need to believe that the recommendation is borne of both knowledge and compassion.

We often try to support our patients in a process that changes focus from ‘everything to live longer’ to ‘everything to live better’. We must acknowledge the great courage in forgoing or withdrawing treatment, sometimes an even braver step than the decision to undergo grueling intervention in the hope of prolonging life.

Sensitivity to differences

There is no one best way to deal with life-threatening illness, and cultural, religious and interpersonal factors strongly affect individual approaches. Individualized care is grounded in the recognition that human responses to the same event vary dramatically, and that only part of this variation is predictable.

Cultural sensitivity must also recognize the heterogeneity of different cultural and religious communities. Indeed, reductionist anthropological approaches that foster cultural stereotyping are best avoided in favour of an individualized approach, which explores the values and goals of the individual patient and his or her family, within his or her environment.

Trust

Through empathy, compassion, honesty, humility, sensitivity and diligence we aim to develop a bond of trust. We aim to build a trust that is sufficiently robust such that patients and their families feel secure in effective care planning, and develop courage and resilience despite the profound difficulties of their circumstances.

Featured image: Cheonggyecheon Umbrellas by travel oriented, CC BY-SA 2.0 via Flickr.

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