Deirdre Downes-None of Us Can Do It Alone


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2014 Jewish Home Lifecare Palliative Care Conference: It's Not the Place, It's the Practice

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  • What happens at intake – how is information received and communicated to the whole team? The person’s life story, the history of their illness, their beliefs
  • Dietician asking about food choices, consistency – together coming up with questions for a family, Therapeutic recreation changed approach to care – small group as knowledge of dementia increased, hospice aide and can figuring out best time to be present, housekeeper noticing pill crusher made noise, md engaging and listening to aodes – ready to give input abt care abt interactions – better assessments rehab – positioning relaxation proper equipment for dining for communication - all in the context of the person
  • The woman with the gangrene – daughter promised never to amputate had cared for her at home for years while working-
  • C n a knows it is best to leave a woman in bed and this knowledge does not get shared – others face resistance 2. the writer who worked til 4am and is now being put to bed at 8 and staff say he is up all night trying to get out of bed, one staff member knows music soothes a resident but the others do not , the pt who is npo and the aide who thinks we are starving him
  • weekl
  • NY Times, the jumpsuit, the story of the rabbi -, the aide who sings, how to make a safe place – consistent and on-going
  • This is the role of the social worker during this process. Point out many families educated by the media – do not understand the disease or its progression
  • References available how do we use the MDS to learn abtdiscomfort,and comfort
  • Focus on the environment –over stimulation creating calm noise where people sit
  • References available environmental (questions: who attends your team meetings?, how is information gathered and shared?)
  • Stay on track
  • Shrouding the body, recognizing the loss – admissions process, memorial service, the story of the flower.
  • Deirdre Downes-None of Us Can Do It Alone

    1. 1. None of Us Can Do This Alone Deirdre Downes, LCSW November 12, 2013
    2. 2. Interdisciplinary Team The role of the palliative interdisciplinary team is to address the holistic nature of suffering from intake through death and bereavement support. (Fordham & Howell, 2012) 2
    3. 3. Who is the Team? •The Resident •Pastoral Care •The Family •Speech •The Certified Nursing Assistant •PT and OT •The Dietician •Therapeutic Recreation •The Physician •Hospice Team •The Nurse •Social Work 3 •Housekeeper
    4. 4. As a young nursing assistant, I was curious…. •Who is this person in the bed? •What is her story? •Who are these people in the photographs? •How could they have put her here? •…There was more I needed to know to provide comfort. 4
    5. 5. Communication Communication problems between palliative care team members can impact negatively on patients’ quality of life. •Poor cross shift communication •Hierarchical approach •Part of the story is missing •Assumptions are made •Judgments •The rushed intake •What does good communication look like? 5
    6. 6. Knowledge •What does your staff know about dementia? •When was the last time there was dementia training? • Do you hear? - that’s just the way she is, she always does that…. 6
    7. 7. Dementia •5.4 million Americans with Alzheimer’s Disease •Projection up to 16 million in 2050 •1 in every 8 Americans age 65 and older has Alzheimer’s •Nearly half of people age 85 & older have dementia •Alzheimer’s is the sixth leading cause of death in the U.S. (Alzheimer’s Association, 2012) 7
    8. 8. Progression of Dementia Mild I N D E P E N D E N C E Moderate or Mid-Stage Severe or Late Stage Terminal Impaired memory; Personality changes; Spatial disorientation Confusion; Agitation; Insomnia; Aphasia; Apraxia Resistiveness; Incontinence; Eating difficulties; Motor impairment Bedfast; Mute; Intercurrent infections; Dysphagia ADVANCED DEMENTIA (Hurley & Volicer, 1998) TIME
    9. 9. Values, Knowledge, Attitudes •Clarification of health care values is important in everyday clinical decisions, advance care planning & the resolution of ethical dilemmas (Karel, 2000). •Knowledge & attitudes impact practice (Bradley et al. 2002, Werener, Carmel & Zeidenberg, 2004). •Is there space for communication about values, for sharing knowledge, for checking in with the team? 9
    10. 10. Weekly Meetings on Dementia Unit •A safe place where beliefs, knowledge & day to day concerns & observations are shared. •Risks: “ I am afraid to put her to bed; she might fall.” •Family Histories: “ It is painful to visit after my wife’s death.” •Spirituality provides comfort: “ Is it okay to pray with a resident ?” •Education: “Doesn’t morphine kill people?” 10
    11. 11. Certified Nursing Assistants •C.N.A. communication on end of life care processes improves end of life care processes in nursing homes.(Zheng & Temkin-Greener, 2011) •The role of the C.N.A.: care provider, friend, family member •Give them permission to share their knowledge. 11
    12. 12. Needed Information: Families & Staff •Most types of dementia are terminal: families need help understanding the course of the illness & what to expect. Someone needs to tell them… •Education through: Family council meetings, Support Groups, Care Plan Meetings - important to be proactive and not wait for the crisis point. 12
    13. 13. What do families want? •Resident to be pain & symptom free •Sense that their loved one is receiving good care •Good lines of communication with nursing home staff – families want information •Being able to say goodbye (Munn, 2006, Biola, et al 2007) 13
    14. 14. Comfort-Focused Care for persons with advanced dementia •Focuses on recognizing and relieving pain •Addressing distressing symptoms: signs of agitation, loneliness, boredom, anxiety, poor appetite •Is an active approach to care – not “nothing can be done…” 14
    15. 15. Behavior as a Form of Communication •The 24 hour day: everyone’s observations help decipher what the resident is trying to tell us through their behavior. •First Meet Basic Needs, then ask: What makes this person comfortable? Naps, Quiet, Going outside, Music, Dining, Exercise, Gentle Massage, Relationships… can we aid in comfort •Think about Spiritual Comfort: Prayer, Hymns, and more •Engage the family – team efforts bring the family comfort (Kitwood, 1997; Volicer &Hurley, 2003; Kolansker&Litaker, 2006) 15
    16. 16. Families as Partners •Families provide the history & help us get to know each person: social work role includes documenting the history and sharing with the community (About Me, bulletin boards, creative ways of sharing). •Creating tools – an activity for families: Memory Books, iPods •This information can guide end of life care 16
    17. 17. Goals of Care Discussion • Attention to detail: should take place in quiet area (no distractions); • Everyone should have a place to sit • All staff involved should understand dementia, course of the illness, & comfort as goal • Families need time to take in information – understand benefits/burdens • Ask for feedback: what did family hear? What do they understand? • What can the family expect to happen next? 17
    18. 18. Nurture the Team that Nurtures the Patient It’s all about relationships: recognize the loss 18