The Essential Role of. Care

Transcription

1 The Essential Role of Volunteers in Patient Centered Care Betty Ferrell, PhD, FAAN, MA, FPCN, CHPN Professor & Research Scientist City of Hope Duarte, CA California Association of Hospitals and Health Systems

2 Volunteers as the Moral Voice in Health Care Advocating for Attention to the Person in Illness

3 Quality of Life Dimensions of Quality of Life Physical Well Being & Symptoms Functional Ability Strength/Fatigue Sleep & Rest Nausea Appetite Constipation QOL Psychological Well Being Anxiety Depression Enjoyment/Leisure Pain Distress Happiness Fear Cognition/Attention Social Well Being Caregiver Burden Roles & Relationships Affection/Sexual Function Appearance Spiritual Well Being Suffering Meaning of Pain Religiosity Transcendence

4 Meeting Physical Needs Presence as patients t experience pain or symptoms Advocacy for improved care

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7 Meeting Psychological Needs Humanizing i the illness experience Fear Presence

8 Suffering in Survivorship It was desperate days of nausea and depression. It was elation at the birth of a daughter in the midst of treatment. It was the anxiety of waiting for my monthly chest film to be taken and lying awake nights feeling for lymph nodes. It was the joy of eating Chinese food for the first time after battling radiation burns of the esophagus for four months. These reflections are a jumble of memories of a purgatory that was touched by sickness in all its aspects but was neither death nor cure. It was survival. (Mullan, 1985)

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11 Showing Up Sometimes we can only witness. We cannot fix or do the work of creating meaning. This family responds to support, to ideas, to reframing, but ultimately they have to wrestle with the guilt themselves. We can provide a container, a holding environment of safety so they don t have to do this in isolation. We can keep showing up, even when it s messy and ragged and uncomfortable.

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13 Come Sit With Me Death is awful, demonic. If you think your task as comforter is to tell me that really, all things considered, it s not so bad, you do not sit with me in my grief but place yourself off in the distance away from me. Over there,,you are of no help. What I need to hear from you is that you recognize how painful it is. I need to hear from you that you are with me in my desperation. To comfort me, you have to come close. Come sit beside me on my mourning bench. (Wolterstorff, 1987)

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15 Meeting Social Needs Volunteers are the primary caregivers of family caregivers Illness as a family experience

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17 The Suffering of Children and Families (cont.) A mother was asked to describe what it was like to have a child with cancer and the impact this experience had on the family. She said that it was as if someone threw a grenade in our living room, and went on to say, we were a close family, but I ll tell you, cancer can kill a close family (Ferrell, Rhiner, Shapiro, and Dierkes 1994)

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19 Meeting Spiritual Needs Illness as a spiritual it experience Religion Beyond religion

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21 Rebirth of the Clinic Under this new medical covenant, a spiritual-scientific practitioner would affirm that the transcendent is made manifest at the edge of the surgeon s knife, at the tips of the palpating fingers of the pediatrician, in the firm handshake of the internist, in the birth of the child whose unwed mother has AIDS, in the tears of the woman who feels a hard lump in her one remaining breast, and in the vacant stare of the elderly man with dementia. (Sulmasy, 2006)

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23 Volunteers as Central to Patient Centered Care Volunteers seek to create the kind of care we would seek for those we love.

24 Realities of the Future Aging Society Sicker Patients Economic Demands Workforce Demands Demand for Patients Centered Care

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26 Volunteers will continue to be the essential link to quality care

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