Beyond Quality of Life: the Meaning of Death and Suffering in Palliative Care


The majority of patients treated for cancer will have pain at some point in their journey. Suffering and deathare common events in cancer patients. Palliative care has been very successful in reducing the discomfortcaused by physical pain, but does not have the means to address the questions related to the meaning of sufferingand death. The soothing of physical pain has helped highlighting other forms of pain, such as spiritual andexistential pain, that uniformly accompany the terminal phase of the disease. Health care providers should beable to identify existential and spiritual pain for several reasons. First, because misdiagnosing these conditionsmay lead to inappropriate use of opioids and sedatives and may deprive both the patient and the patient’sfamily of the experience of death as an essential and irreplaceable experience of life. Second, because spiritualand existential pain may be addressed by properly trained professionals that should be involved in themanagement of the patients when needed. Chaplains and spiritual directors have no lesser role in the managementof a patient than a cardiologist, a surgeon or a psychiatrist. Third because clinical scientists cannot close theireyes in front of one of the most common human experiences falling under their domain. Lack of training and offull understanding is a lame excuse for skirting the suffering of a person dying under our eyes. Health careproviders unwilling or unable to abandon their areas of comfort and to embrace new and risky experiences area liability for themselves, for their patients, and for the society they serve. Both spiritual and existential painaddress the basic questions of human consciousness: while are we alive? Why do we die? Spiritual pain is mostcommonly experienced by a person who has a religious or otherwise sense of transcendence and may be helpedby a hospital care trained chaplain. Existential pain is more typical of a person uninterested in a transcendentcontext and may be more challenging to address in the health care context. Though both may produce emotionalpain, neither is by itself a form of emotional pain and cannot be fully cared for by a counselor. The clinicaldefinition of spiritual and existential pain is evolving and so is its treatment. Classical clinical trials have little tooffer for these conditions. Qualitative research in its various forms, including open ended questions, contentanalysis and mainly personal narrative are the most promising forms of research to comprehend spiritual andexistential pain.