Despite decades of medical, theoretical and philosophical advancements, Canadians continue to experience dehumanized, undignified and undesirable death stories which creates unnecessary suffering for individuals experiencing complex conditions at end of life. This paper will examine intercultural influences on suffering to harmonize current realities with opportunities for progressive pathways in Canadian palliative care practices. Reflective discussion guided the examination of different positions with a range of curiosities: Does the medicalization of palliative care effectively relive both pain and suffering? Is pharmacological palliative care a medically-minded strategy to avoid intimate inclusion in suffering? Is the definition of palliative care purposely created to solve versus resolve suffering? This paper will theorize Canadian healthcare professionals are practicing in a state of dissonance in relation to death, dying and suffering. Through the transformation of suffering, intercultural influences can demonstrate discrepancies among current professional perceptions and the cultural changes needed to harmonize palliative care practices in multicultural societies.
Keywords: palliative care, suffering, dissonance, intercultural
Harmonizing a State of Dissonance:
An Intercultural Transformation of Suffering in Dying and Death
The emergence of palliative care can be considered an attempt for cultural change. Relief over cure focused practices emerged in opposition of the medical model which had previously led healthcare with a perspective of death as a medical failure and suffering as an inevitable response to emerging life-prolonging measures. Suffering at death grew through professional-led isolation. A Canadian health or social care professional, if considered a prideful being, has been progressively and culturally pressured to accept ‘defeat’ and learn of new practices at end of life, replacing the widely practiced curative approach towards the relieve of pain and suffering.
Four decades of palliative inclusion has developed conflict between normalizing the acceptance of death and dying in medicine while avoiding the need for professional internalization of this perception. Instead death and dying continues to automatically and negatively include suffering as the normality. As demonstrated in recent literature on the health and social care experiences of individuals with chronic, complex and life-altering conditions, current palliative practices are superficially enforced in order to avoid the deep cultural change stemming from the perspective of care professionals towards suffering. Authentic integration of intercultural practices may change and influence, in order to harmonize, the professional perception projected towards patient suffering at death and in dying.
Around the world death and dying are becoming relevant topics of conversation more commonly in war and violence but also euthanasia which attempts to distance itself from taboo. In Canada, palliative care adopted a defined cultural inclusion of the dying process within the healthcare system through enforced normalization in its very definition (World Health Organization, 2017). Appropriate suffering responses have long been taught to Canadian health and social care students (Rev. Canon L. James, personal communication, November 17, 2017). Bill C-14 (2016) included suffering as a determinant for ending a life which must reach an intolerable level, ensuring each Canadian suffer in an intolerant manner before being given the choice to die. Overtime, Canadian health care systems have developed into a state of dissonance.
The pharmacological approach to pain management uses a singular view of suffering; that it is a symptom of pain whether physical or psychological. Suffering is in fact an intentional state given a perceived threat towards one’s personal identity or individuality (Den Hartogh, 2017). To feel pain, to feel sad, to feel anger; although considered negative qualities these feelings are often adequate responses to certain situations. When individuals and their families are in situations vulnerable to suffering, professional guidelines detail how practitioners should support these situations with interventions to offer relief to reduce levels of pain. What is not included is left up to a professional’s perception of the events. Pain scales measure pain but to what capacity (Campbell, Kelly, & Rovnyak 2017). If quality of life is a pivotal aspect to the palliative care philosophy, why are many still experiencing death in a state of indignity (Pulman et al., 2012) dissatisfaction (Gomes, Calanzari, Koffman, & Higginson, 2015) and complex grief (Ireland, 2017). Can definitions, laws, and codes of ethics internalize a professional’s understanding of palliative care? Is a professional’s experience of time more important than the time is takes to understand a patient, their subjective experiences of their life as they, as we all, know ourselves best (Dahlberg, Todres, & Galvin, 2008)? Current approaches fail to recognize the cognitive aspect of all emotions, including those negatively perceived as, “all more or less adequate responses to the situation the person finds herself in” (Den Hartogh, 2017, p. 417).
The Buddha provides enhancement to the Canadian projection of pain and suffering at end of life. The Buddha’s Two Arrow approach to pain and suffering is to recognize that the first arrow, that of pain, does not require the second arrow, that of suffering, instead it is optional (Halifax, 2009). The inclusion of pain and suffering alone does not provide the qualities that can be found through the transformation; from the internalization of this perception of suffering.
Considering suffering is unique to each individual, it has become common knowledge that communicating to individuals with complex and life threatening illnesses requires empathy and respect. In the United Kingdom, where Canadian rights receive Royal Assent, there was a recent discovery for, “a need to trigger a major cultural shift in the way everybody in care thought about dignity” (Pulman et al., 2012). A Buddhist view could support the internalized perception of suffering as an option, not requirement, in death and dying versus an avoidance of it. In America, Omilion-Hodges & Swords (2015) agreed that although, “Intense sharing of pain experiences by others can cause empathetic distress and reduce helping behaviours” (p. 2) mindful communication, the “thoughtful and intentional use of verbal and nonverbal communication” (p. 329) has been shown to be an effective method for communication. For decades the practice of mindfulness in communication when approaching patients who are experiencing suffering, grief and loss has been taught to health practitioners in Canada (Rev. Canon L. James, personal communication, November 17, 2017).
Although the palliative care philosophy illustrates a compassionate approach in practice, compassionate behaviours are often avoided or referred to specialists with the perception of suffering as a symptom to be relieved.
A team approach in palliative care settings offers greater opportunity to meet the complex needs of Canadians through the integration of multidisciplinary skills and knowledge. DeMiglio & Williams (2012) explain, “despite being a critical component of the team, the psychosocial spiritual and bereavement advisor positions have often fallen by the wayside because of lack of funding” (p. 423) while “there is no consistency in palliative care service delivery model across the province of Ontario” (p. 421). An Aboriginal influence within the Canadian practice of palliative care multidisciplinary team models can provide deeper insight into the potential of collaboration in experiences vulnerable to suffering. The missing internalized perception is found through the transformation of suffering in which Aboriginal Peoples come together in crisis with an open view of family support (Robbins & Delwar, 2007). It is suggested the use of teamwork should include the perspective that moments of suffering can be transformed into a strong sense of support and connectedness.
Palliative care reflects Aboriginal cultures in its original hospice movement as neither is based on physical facilities, but environment (Saunders, 2001). Robbins & Delwar (2007) state “communities often have different understandings of traditional healing as well as different needs. Therefore, a healing program in an urban centre, for example, might require different solutions than a healing program in a remote northern setting.” (p. 6). Inclusion and community are a part of the hospice philosophy to create a sense of belonging which can bring meaning to patients and their families experiencing the dying process (Saunders, 2001).
Rooted in experienced knowledge practices The Medicine Wheel is used by Indigenous Peoples as a directional doorway, demonstrating life as a rhythmic cycle where meaning can be found throughout the entire journey of life. Current palliative care approaches are documented as inclusive with many areas and domains but do not imply a sense of rhythm. Patterns to determine wellbeing have been shown as round but stagnant or may appear are linear such as certain palliative care service models. The practice of a circular pattern in its true form, one with the ability for movement, can meet suffering in death and dying with an ability to transform through the possibility of, and opportunity for, change.
Meaning in Moods
Those who show diagnosable symptoms in Canadian culture are offered a different message to communities practicing Shamanism whereby suffering is treated with compassionate curiosity, whereas death is seen as a doorway into other lives (Halifax, 2009). As Canadian culture attempts to include those facing complex and life-threatening experiences, finding meaning in suffering is lost. Instead, professionals in Canada are taught to perceive the following elements of suffering as symptoms; experiencing guilt, considering the meaning of life, asking the question why, showing fear and anxiety and displaying uncertainty (O’Brien, Welsh, & Dunn, 1998). Symptoms are perceived in medical models as indicators for control, palliation or cure which actively avoids the understanding that suffering is an intentional cognitive state and perpetuates the dehumanization of experiences vulnerable to suffering. The perception of the elements of suffering as symptoms to be alleviated avoids bearing witness to and the understanding of suffering as an indicator for potential growth and meaning. Referrals to social workers, spiritual and pastoral care services or bereavement counsellors can offer support, as is demonstrated in Canadian multidisciplinary palliative care teams. However, if only a part of the care team demonstrates openness in experiences of suffering, benefitting from a compassionate approach, patients will still experience the projections of those with internalized avoidance. “Clinicians not only must be experienced in addressing physical and physiological needs, but also must demonstrate compassion through their words and actions” (Omilion-Hodges, & Swords, 2015, p. 328).
Dissonance amongst death, dying and suffering was seen in the case of Rob Rollins (Ireland, 2017) as medical staff determined there was no longer anything that would reverse his condition, lengthen his life or avoid an approaching death. This was following chemotherapy and throat cancer in which medical intervention did not improve his quality of life only increased levels of pain and associated suffering. If death was a choice, would Canadians then look for a message amongst mass suffering? The question then becomes “At what level does medical treatment that takes time and resources become a problem and begin to challenge the original hospice values” (Thoresen, Trygve, & Heggen, 2011, p. 262).
If those who’s experiences differ from the ‘norm’ are compared to unusual behaviour in shamanism, marginalized individuals and populations could be perceived as valuable members of society that are providing the message of where societal values and emphasis are lacking. Individuals in vulnerable situations would also benefit from a meaning amongst their suffering rather than additional suffering as they become perceived to be outside the ‘norm’.
Although a radical practice decades ago, Carl Roger’s person-centered approach is considered still in need of enhancement and humanization is considered still in need within palliative care (Pulman et al., 2012). Perhaps lifeworld-led practices, originating from Germany and recently published in Sweden, could brings an authentic inclusion of suffering as a subjective experience influencing our sense of vitality, our possibilities of peace and movement which can be found in any condition (Dahlberg, Todres, & Galvin, 2008). This would lead professionals in care fields to recognize how they think, how they feel and how they behave towards care recipients. What one internalizes is what one projects. These indicate changes in the field of medicine need to be internalized by practitioners in order to create the cultural changes it intends in dying, such as the normalization of death and its perceived attachment to suffering.
Suffering is an intensely intimate experience. Death and dying and need not to be burdened further by an inability to provide the relational aspects of care defined in palliative care models. Although current literature details the characteristics and practices to effectively perform palliative care, there is less emphasize placed on the inner transformation needed. This change is in perspective thus projection; it is developed internally and expressed externally through empathetic compassion towards the suffering of others (Pulman et al., 2012). Harmonizing the current state of dissonance in Canadian care practices at end of life can be realized with a change in perspective through an intercultural transformation of suffering in death and dying.
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