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Death With Dignity:Dignity-conserving practices          Jennifer JilksAuthor: Living & Dying in Dignity                  ...
Patient advocate & Volunteer                               2
Topics  1.   Barriers to a good death  2.   Death with dignity  3.   A good death  4.   Life review  5.   Lessons learned ...
Barriers to a good death•   Education, money, inability to navigate the system.•   Healthcare only works well five days a ...
Barriers to a good death                           5
Most of us: a good death          Obituary numbers by Age range                     90s 18                     80s 19     ...
Ontario LTC CostsAccording to the Ministry of Health, average costs ofproviding care are as follows:• Acute inpatient and ...
Ontario LTC Data•   622 LTC homes•   ◦ 76,000 residents living in LTC•   ◦ 55,000 staff in LTC homes•    Residents admitte...
A good death• One in which the four dimensions of good death  are met:1. Physical2. Spiritual3. Social4. Emotional/psychol...
Muskoka Mosaic:A life worth livingMEMORIES. Husband and wife, Harry and Astrid Wahl, spent time sharing memories duringHar...
A good death = 9 C‟s1.   Communication between agencies2.   Continuity of care3.   Caregivers who smile4.   Comfort measur...
The Change Foundation1. THE PRIMACY – AND PROBLEMS – OF PRIMARY CAREStop the dead ends; make primary care accountable for ...
Pain Management Forms                        15
16
If we frame our lives with hope…                                   17
A good death means HOPEHopes must change, as we change our horizons.•   Hope for a sunny day•   Hope for visitors (or hope...
A good death               19
Life ReviewWho am I? How did I do? How did I live my life?Thus, an important difference between reminiscenceand review mus...
Life Review•   Where did you grow up?•   Did you like school?•   What was school like?•   What about your best friends?•  ...
Lessons learned                             Where did my walker go?                           I had it a minute ago       ...
Lessons learned• "You have to realize its not the end of your life;    its a part of it.”•   “I think these have been the ...
Life Review              24
Life ReviewDad with his sister, Irene (D. 2011)   25
6. Write or scribe•   Putting thoughts to paper important part of healing•   Puts issues into perspective•   Gratitude jou...
7. „What If‟ Train•   Hop off the “What If” train•   Lockdowns with students•   Deal with the here and now•   Prepare and ...
What needs to happen?•   Patient navigators•   Improve PSW/nurse training•   Increase numbers of PSWs, Nurses, NP•   Force...
More information available here:• ontarioseniors.blogspot.com                                   29
8. Resources     $20               30
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Death with dignity

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It is possible to have a 'good death', in fact most of us die without pain, and in dignity. Much lingering death can be avoided by asking important questions of our doctors.

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Death with dignity

  1. 1. Death With Dignity:Dignity-conserving practices Jennifer JilksAuthor: Living & Dying in Dignity 1
  2. 2. Patient advocate & Volunteer 2
  3. 3. Topics 1. Barriers to a good death 2. Death with dignity 3. A good death 4. Life review 5. Lessons learned 6. Write or scribe 7. „What if‟ Train 8. Resources Dignity -means to be worthy of honour, respect, or esteem. 3
  4. 4. Barriers to a good death• Education, money, inability to navigate the system.• Healthcare only works well five days a week.• Care tenor: disrespect by staff: You Matter• Care recipient emotions: fears, burden, anger, dementia• Physician ignorance; Myths of pain management• Inadequate staff training• Conflict amongst family members• Lack of qualified staff• TPAs who fail to communicate effectively: PSW, nurses 4
  5. 5. Barriers to a good death 5
  6. 6. Most of us: a good death Obituary numbers by Age range 90s 18 80s 19 70s 7 60s 3 50s 4 40s 2 Out of 54 obituaries, 28 stated they died peacefully 6
  7. 7. Ontario LTC CostsAccording to the Ministry of Health, average costs ofproviding care are as follows:• Acute inpatient and newborn: $996.59 per day; $363,755 per year• Chronic inpatient: $614.09 per day; $224,142 per year• Rehab inpatient: $623.67 per day; $227,639 per year• Mental health inpatient: $734.78 per day; $268,194 per year• Long term care: $144.77 per day; $52,841 per year• Home care: $3,956.76 per year; $31.87 per hour 7
  8. 8. Ontario LTC Data• 622 LTC homes• ◦ 76,000 residents living in LTC• ◦ 55,000 staff in LTC homes• Residents admitted with increasingly complex• care needs• ◦ > 70 % with cognitive impairment or dementia• ◦ Average 5 chronic diseases• ◦ Average 13 medications• ◦ Average life expectancy 18 months• High level caregiver stress• 10 - 20% residents with low care needs• ◦ Community care not accessible or available 8
  9. 9. A good death• One in which the four dimensions of good death are met:1. Physical2. Spiritual3. Social4. Emotional/psychological needs 9
  10. 10. Muskoka Mosaic:A life worth livingMEMORIES. Husband and wife, Harry and Astrid Wahl, spent time sharing memories duringHarrys stay at Hospice Huntsville. He passed away on Oct. 13 after a third boutwith cancer.HUNTSVILLE – In his 78 years Harry Wahl did a lot of living, taking in as many experiences ashe could. So when it was his time to say goodbye to the life he loved, to his dear wife, to hischildren, grandchildren and friends, he was ready and at peace with his oncoming departure.“I have never been so much at peace as I am at this moment,” said Wahl, from his bed atHospice Huntsville. “I‟ve always considered death to be a part of living. I‟ve never shied awayfrom it. I‟m looking forward, with a lot of curiosity, to seeing what‟s at the end of the tunnel.Even if I find there‟s no light there, I‟ve been a spectator of the universe and that in itself isreward enough.”Part of Wahl‟s peace came from knowing he‟s taken care of his funeral arrangements, financesand the home he shared with his wife, Astrid, to help make the transition easier on her.With humour always playing a role in their 47-year marriage, Astrid joked that he wanted totake care of the funeral arrangements so she couldn‟t put him in a suit. 10
  11. 11. A good death = 9 C‟s1. Communication between agencies2. Continuity of care3. Caregivers who smile4. Comfort measures5. Compassion6. Care Staff who who go beyond the call of duty7. Care plans that work8. Collaboration with a functional family9. Comments: friends who know what to say/ do. 12
  12. 12. The Change Foundation1. THE PRIMACY – AND PROBLEMS – OF PRIMARY CAREStop the dead ends; make primary care accountable for guiding people‟stransitions.2. THE IMPORTANCE OF CONNECTIONS AND CLARITY ABOUT NEXTSTEPS“Connect the Docs.” Connect all healthcare providers and services to, for, andwith patients and caregivers. Clarify and simplify the processes. 3. THE COMMUNICATION DEFICITCommunicate early, often and well – provider to patient/caregiver, provider toprovider, system to system. 4. THE INCLUSION FACTOR – HEY, WHAT ABOUT US? Include patients, families and caregivers in decisions that affect their lives andhealth.5. ISSUES OF EQUITY Don‟t let people who are facing barriers fall behind.The Change Foundation: Loud and Clear: Seniors and caregivers speak out about navigating Ontario’shealthcare system, 13
  13. 13. Pain Management Forms 15
  14. 14. 16
  15. 15. If we frame our lives with hope… 17
  16. 16. A good death means HOPEHopes must change, as we change our horizons.• Hope for a sunny day• Hope for visitors (or hope for none!)• Hope for small things that make life good to live• Hope for laughter; the sound of happy voices• Hope to go outdoors• Hope to be comfortable• Hope for understanding• Hope for acceptance of what is. 18
  17. 17. A good death 19
  18. 18. Life ReviewWho am I? How did I do? How did I live my life?Thus, an important difference between reminiscenceand review must be addressed.Life review is “not a random sharing of pleasurablepast events, but rather a structured process containinga component of self-evaluation.”Life review can be used with both patients andpatients‟ families; the outcomes include increased lifesatisfaction and accomplishment, promotion ofpeaceful feelings, and a state of integrity. 20
  19. 19. Life Review• Where did you grow up?• Did you like school?• What was school like?• What about your best friends?• What did you do for fun in your youth?• Tell me about overcoming an obstacle in your life.• What is your deepest regret or disappointment in your life?• What do you think are the most important things about life?• What do you think about death?• What are your life‟s achievements?• What do you find are the most satisfying things in life?• Who have you admired and why?• Describe the kind of person you have been.• What were the happiest moments in your life?• What mystifies you about life today?• What is your favourite food?• What messages would you like to leave your family?• Is there anything else you would like to say? 21
  20. 20. Lessons learned Where did my walker go? I had it a minute ago I walked down the hall Now I don‟t see it at all. Did somebody take it? It‟s nearly new with a nice black seat and legs of blue. Please help me find it. I want it. Oh for heaven‟s sakes I‟m sitting on it.Kay Devlin (1916 – 2012) 22
  21. 21. Lessons learned• "You have to realize its not the end of your life; its a part of it.”• “I think these have been the best 5 years of my life!”• Sometimes he is very much himself, she tells me!• “I learned so much about myself and about others; things I hadnt realized when I was nursing.”- Kay Devlin 23
  22. 22. Life Review 24
  23. 23. Life ReviewDad with his sister, Irene (D. 2011) 25
  24. 24. 6. Write or scribe• Putting thoughts to paper important part of healing• Puts issues into perspective• Gratitude journal: 3 things @ day• Make a memory album, view a photo album• “We are perfect and we are allowed to make mistakes!”• Forgive yourself 26
  25. 25. 7. „What If‟ Train• Hop off the “What If” train• Lockdowns with students• Deal with the here and now• Prepare and plan realistically• Make journals of your medical visits• Take notes, record visitors• Keep notes of PPS, or other systems• Demand copies of medical records/stats 27
  26. 26. What needs to happen?• Patient navigators• Improve PSW/nurse training• Increase numbers of PSWs, Nurses, NP• Force physicians to be accountable• House calls by NPs or physicians• Better Home Care 28
  27. 27. More information available here:• ontarioseniors.blogspot.com 29
  28. 28. 8. Resources $20 30

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