EXISTENTIAL DIMENSION OF SUFFERING AT THE END-OF-LIFE

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1 EXISTENTIAL DIMENSION OF SUFFERING AT THE END-OF-LIFE 1 Maurizio Mannocci Galeotti Firenze Italy

2 (Psico)Pathology yes and not? Declaration of Alma Ata 1976 on health & Ottawa 1986 on Heath promotion Palliative medicine in not an other medicine, it is perceived as a new medicine, just because it can be carried out exclusively considering, in our daily work, the suffering person as an Unity. Tackle complexity->main tool is cartesian deconstruction of a paradigm extremely complex. Wrong act separately when paradigm is not disease but people who suffers. 2 Against deconstruction of Suffering

3 Hence, the routinely western medicine utilizes: Deconstruction of suffering (only physical... psychological symptoms are real) Devaluation of the patients personhood (only the body is real) Overreliance seemingly objective data from technology (only objective measurable data are trustworthy, not the pts description of symptoms) Loss of emphatic communication skill (only pts is of interest) (Cassell) Suffering is a sense of brokenness or splitting apart that may be experienced as: A split between the self and the now malfunctioning body A sense of isolation from human community A sense of separation from transcendent 3 Against deconstruction of Suffering

4 Death is not a medical event, which can defines only by scientific categories and language. Ostaseski (Zen Hospice) Medicine doctors nurses know the disease but how I live it? How I feel it? Only I am able to know! Gianni 4 Against deconstruction of Suffering

5 Dear Maurizio as you have already understood the biopsy confirms the diagnosis of malignant Neoplasia but we have chances we can do CT or RT, than surgery..the % of survivors at 5 years are but it is an average hence, like others patients going to die earlier may be I could be one of them Nerina DESPAIR AT THE END-OF-LIFE 5 1 DAY

6 Many different mixed reactions Why me!?! Why now?!? You are wrong! Make new analysis, please I am a dead man walking I m lost, none or nothing can help / save me What chances I have now? Tell me please What I am doing now of my life? Don't tell to my relatives, give me time please 6 WHAT IS HAPPEN?

7 Awareness of broken balance: Life span expectation vs rational duration esteemed hence Illusion of immortality vs awareness of limited life 7 WHAT IS HAPPENED?

8 At once I recognize that my time is limited. Finally I realize that there was no longer any realistic possibility of a cure Ann The most optimistic expectations are: Decreasing my performance status by chemotherapy and by cancer Even if they stop my cancer each year, for all my life, I must check for possible next relapse. Every day in the future I ll live under Damocles' sword Living an Irreversible heavy continuing loosing...day...by day 8 WHAT IS HAPPENED?

9 I ve lived my entire life to please my parents, may family but I don t know who I am I can t die yet because I ve yet to really live I don t know who I am and now it s too late to find out! Ann She was able to articulate, to finally express the depth of her spiritual suffering.minimize regrets is very important..her suffering was well beyond the reach of morphine.. (OTIS GREEN 2006) 9 WHAT IS HAPPEN?

10 Wide situational analysis / full immersion to individualize our intervention of assessing the person in discomfort so that we might be better understand the source of suffering, we need to strive to integrate an appreciation of cultural, social, family personal Bear in mind that this never lend to absolute. Rather invite us to increase our tolerance of ambiguity, to learn to be pragmatic. Different strategies for different folks and our responsibility is to be skilful and creative enough to have many choices available to palliate to soothe and relieve those we serve 10 WHAT WE HAVE TO DO?

11 My job is to offer anticipatory guidance, education, support, a companioning presence, to bear witness to another s journey of discovery and growth. Hence if a diagnosis of cancer is an obliged invitation to consider the possibility of one s own mortality, also invite the attentive caregiver / case manager to consider the same. Then you discover that despite the challenges inherent in identifying oneself as a change-agent, there is an unavoidable introspection work for me too on my own sources of meaning. Cicely Saunders: a dying person needs the community and the community needs the dying person 11 WHAT WE HAVE TO DO?

12 DESPAIR AT THE END-OF-LIFE includes several components: Desire for hastened death Demoralization (Kissane) Loss of sense of dignity (Chochinov) Hopelessness Loss of meaning (Breithbart) Absence of spiritual dimension (Tarakeshwar) ALL EXISTENTIAL ISSUES 12 WHAT WE ARE LOOKING FOR?

13 Need for meaning is universal, it provides a sense of purpose and connection in people s life. Living without a meaning is the core of total suffering Meaning as a basic drive in human psychology, the need to find a sense of purpose, of value, of efficacy and of self-worth in own life. Because it allows for a sense of well-being, peace,contentment it facilitates a self-transcendence and a sense of connectedness with others and that which is greater than oneself. Life never loses meaning in every situation and for everybody 13 VICTOR FRANKL & LOGOTHERAPY

14 Chochinov in 2006 presented a research on 211 patients in palliative care, demonstrating that the only variable to enter a logistic regression model predicting overall sense of dignity was: Feeling life no longer had meaning and purpose. Despite the individual variability of what affect a sense of dignity for everyone, 3 broad categories have been identified: 1. illness related concerns 2. social or external mediated factors 3. psychological and spiritual considerations 14 DIGNITY

15 87% Not being treated with respect or understanding / Feeling a burden to others 84% Feeling you don t have control over your life 83% Not feeling you don t made a meaningful or lasting contribution / Not being able to independently manage of body 81% Not feeling worthwhile or valued 80% Not feeling supported by your community 60% feeling depressed or anxious / Uncertainly about illness 41% Thinking how life might end 15 Symptoms or Experiences ascribed to their Sense of DIGNITY

16 The most highly endorsed items have an INTERACTIONAL DIMENSION Vicious circle: patients feeling devaluated they undermine their personal sense of autonomy and worth there is a need of relationships it is the 75% of therapy, drugs...prescriptions analysis are less important to avoid loneliness LIFE IS RELATIONSHIP. Gianni 16 DIGNITY

17 Spirituality is concerned with ultimate issues such as a individual s relationship with the deepest self and the mysteries of life and death. Meaning / spiritual well-being Religions are organized systems of beliefs that address universal spiritual questions and offer frameworks of meaning that can be used for making sense of existence. Faith / religious beliefs 17 SPIRITUALITY & RELIGION

18 Tarakeshwar (2006): Studies on psycho-spiritual well-being highlighted 6 themes through spirituality/religion influenced well-being at the endof-life: Self-awareness coping stress relationships and connectedness with others sense of faith sense of empowerment and confidence living with meaning and hope 18 SPIRITUALITY & RELIGION

19 Religion as a coping resource: POSITIVE: benevolent appraisal of negative situation, sense of connectedness of the religious community, a secure relationships with God, fostering hope etc. as well as NEGATIVE: attributions of situations to a punishing God, feeling of abandonment, of guilty, regrets etc. 19 SPIRITUALITY & RELIGION

20 The Tarakeshwar study indicates that, both positive and negative coping are associated with overall patient Q-o-L, hence affect health outcomes. Moreover it is an important issue to find meaning and significance in life and in their illness. Assessment regarding spirituality/religion could be conducted by a few questions posed by the physician within the right setting, where the patients can express all his/her radical feelings Other (McCord 2004) confirms that 83% of patient at a family medicine clinic expressed preference to be asked about their spiritual beliefs by their physicians under 3 conditions: life-threatening-diseases, serious medical conditions and loss of loved ones. 20 SPIRITUALITY & RELIGION

21 Purpose Need to view his/her activities oriented towards a future possible status: extrinsic (short and long term goals) & Intrinsic (fulfilment) Value Need to feel past and current actions good within others Efficacy Need to believe in his/her ability to control both self and the environment Self-worth Need for self-respect, as well as respect from others. 21 FOUR ASPECTS OF MEANING

22 The hope for future fulfilment often determines how people interpret and structure their daily activities. As death approaches, past achievements that once filled life with a sense of purpose, may now seem pointless. Pts. view HOPE as a complex and dynamic phenomenon, and defined it as an inner power facilitates transcendence of the present situation and moves towards a new awareness and enrichment of being. (Herth 1990). 22 HOPE

23 Strategies to foster Hope in pts.,families and staff: Provide comfort and relieve suffering Develop caring relationships Set attainable goals and involve pts. In decision making Support spirituality Identify valued personal attributes and affirm the patient s worth When appropriate, use light-hearted Humour Reminisce about life and emphasize uplifting memories 23 HOPE

24 After taught learned optimism to 40 cancer patients, it was pointed out a very sharp increase in the activity of natural killer cells. (Seligmann 1991) (Perrino) Effect of appropriate Humour: Relieve tension, transcend the present and restore perspective Enable people to deal with difficulties more creatively Enhance a sense of wholeness Establish and preserve a sense of self apart from the vicissitudes of life 24 PATCH ADAMS

25 Universal capacity which allows a person, groups or community to prevent, minimise or overcome damaging effects of adversity. (Newnan 2004) Even though conditions such as lack of sleep, food and various mental stresses may suggest the inmates were bound to react in certain ways, in the final analysis it becomes clear that the sort of person, prisoner became, was the result of an inner decision and not the result of camp influences alone. (Frankel 1946) How to strengthen this resource have many and different answers. 25 RESILIENCE

26 THE PARTNER ORGANISATIONS 26 10/02/14 26

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