Death with dignity

  • 21,998 views
Uploaded on

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.

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.

  • Full Name Full Name Comment goes here.
    Are you sure you want to
    Your message goes here
    Be the first to comment
No Downloads

Views

Total Views
21,998
On Slideshare
0
From Embeds
0
Number of Embeds
55

Actions

Shares
Downloads
0
Comments
0
Likes
2

Embeds 0

No embeds

Report content

Flagged as inappropriate Flag as inappropriate
Flag as inappropriate

Select your reason for flagging this presentation as inappropriate.

Cancel
    No notes for slide
  • TVO’s Why Poverty, White Coat Black Art,
  • The primary one being having money, and a patient navigator.The next is that healthcare only works well five days a week. Truly. This barrier is a brick wall on weekends.What makes a good death?Communication between agencies, continuity of care, PSWs who smile, comfort measure, compassion, nurses who go beyond the call of duty, physicians who make house calls, adequate pain management, physicians who understand geriatrics, treatment plans, care plans that work, palliative pain management nurses, a functional family, respite for family caregivers, friends who know what to say or do.Disrespect between healthcare professionals, nurse bullying, nurses who state "This isn't my job", physician ignorance, physician abandonment ("I'll prescribe pain medication, but I'm not going to do anything else."), infected wounds, pros ignoring the signs of pain, PSWs who won't speak to the powers-that-be.One simple barrier is home care that sends one personal support worker (PSW) at a time to a client, who is a two-person lift. In some situations they can roll the patient, but if you are already in pain, upset with being woken up to be turned every two hours, you get grouchy. Who blames them?Another barrier? Transfer Payment Agencies who are unable to communicate effectively, e.g., Bayshore health who sends a nurse, Red Cross who send a PSW). Not that they are NOT doing their jobs, but they don't seem to communicate with one another. There are no case conferences. I tried having one for my Dad, but the doctor had to go to an accreditation meeting for the hospital. He was very hard to reach.And while we know there is disrespect between doctors and nurses, imagine the disrespect that occurs between nurses and PSWs! Job descriptions are very specific these days.Now, the nurse talks to the doctor, after seeing the patient, and requests that the doctor send order for, say, morphine. Every palliative client in pain sees morphine as their friend. The doctor doesn't return calls, isn't available, isn't at the [insert one: office, clinic, hospital] and staff won't take a message. This isn't uncommon, either. I fought 3 days to get morphine for my dad. It took a pharmacist who counselled me at a break during choir practice. Fight for your dad, he said.Since GPs may not be a pain specialist, or isn't familiar with the case, or hasn't treated this particular condition before, or hasn't done a house call in weeks, s/he may have no idea what is what in the home. Some see this nurse as interfering with the doctor doing their job, and won't put the patients needs uppermost.Friends have written extensively about the competition between healthcare pros: doctors and nurses, as well as nurse practitioners (NP) and physician assistants (PA).
  • The primary one being having money, and a patient navigator.The next is that healthcare only works well five days a week. Truly. This barrier is a brick wall on weekends.What makes a good death?Communication between agencies, continuity of care, PSWs who smile, comfort measure, compassion, nurses who go beyond the call of duty, physicians who make house calls, adequate pain management, physicians who understand geriatrics, treatment plans, care plans that work, palliative pain management nurses, a functional family, respite for family caregivers, friends who know what to say or do.Disrespect between healthcare professionals, nurse bullying, nurses who state "This isn't my job", physician ignorance, physician abandonment ("I'll prescribe pain medication, but I'm not going to do anything else."), infected wounds, pros ignoring the signs of pain, PSWs who won't speak to the powers-that-be.One simple barrier is home care that sends one personal support worker (PSW) at a time to a client, who is a two-person lift. In some situations they can roll the patient, but if you are already in pain, upset with being woken up to be turned every two hours, you get grouchy. Who blames them?Another barrier? Transfer Payment Agencies who are unable to communicate effectively, e.g., Bayshore health who sends a nurse, Red Cross who send a PSW). Not that they are NOT doing their jobs, but they don't seem to communicate with one another. There are no case conferences. I tried having one for my Dad, but the doctor had to go to an accreditation meeting for the hospital. He was very hard to reach.And while we know there is disrespect between doctors and nurses, imagine the disrespect that occurs between nurses and PSWs! Job descriptions are very specific these days.Now, the nurse talks to the doctor, after seeing the patient, and requests that the doctor send order for, say, morphine. Every palliative client in pain sees morphine as their friend. The doctor doesn't return calls, isn't available, isn't at the [insert one: office, clinic, hospital] and staff won't take a message. This isn't uncommon, either. I fought 3 days to get morphine for my dad. It took a pharmacist who counselled me at a break during choir practice. Fight for your dad, he said.Since GPs may not be a pain specialist, or isn't familiar with the case, or hasn't treated this particular condition before, or hasn't done a house call in weeks, s/he may have no idea what is what in the home. Some see this nurse as interfering with the doctor doing their job, and won't put the patients needs uppermost.Friends have written extensively about the competition between healthcare pros: doctors and nurses, as well as nurse practitioners (NP) and physician assistants (PA).
  • Dying woman allowed to keep medical equipment, but care will be cutThis is a story that demonstrates the need to self-advocate. Home First is a program that helps a family take a loved one home from hospital with extra support services, and more care, to relieve the bed shortages in hospital. It is not a long-term solution, as stakeholders simply refuse to have increase taxes for more services. Or is it that politicians refuse to step up and do what is necessary to support those in need of extreme medical care?My friend, Kay, in LTC.My granddaughter loaned me Princess Ducky! Many use the pejorative term Bed Blockers, as if an Ontario senior isn't entitled to be in hospital. The proper term is Alternate Level of Care. They could manage in long-term care, but many do not want to go there, despite many excellent institutions in Ontario. Many seniors are determined to live out their days in their own homes, despite the ability to manage their social, emotional, physical, and medical needs alone, or even with familial help.
  • LTC - Are we on the Right Track - Presented by Dr. Andrea L. Moser, MD, MSc, CCPF,  FCFP |  Focus Practice in Care of the Elderly | Behavioural Supports Ontario, Regional Medical Advisor, North Simcoe Muskoka LHIN |  President, Ontario Long-Term Care Physicians (OLTCP)  
  • A good death is one in which the four dimensions of good death are met:Physical (pain control, breathing, fatigue, bedsores), Spiritual (accepting death, doing a life review, seeing meaning on one's life, finding peace), Social (being conscious; communicating with family/friends, careworkers; communicating needs, wishes; sharing thoughts, feelings; having closure; saying farewell; a quiet, private atmosphere) and Emotional/psychological needs (accepting help; not being a burden; being peaceful; having self-esteem; enjoying simple pleasure by releasing hope by gaining peace; making choices).
  • http://www.cottagecountrynow.ca/news/article/1519923--muskoka-mosaic-a-life-worth-living
  • Dignity Therapy: Final words for final days, Harvey Max Chochinov
  • The Change Foundation: Loud and Clear: Seniors and caregivers speak out about navigating Ontario’s healthcare system,
  • Faces Pain Scale – Revised (FPS-R)In the following instructions, say "hurt" or "pain," whichever seems right for a particular child."These faces show how much something can hurt. This face [point to left-most face] shows no pain. The faces show more and more pain [point to each from left to right] up to this one [point to right-most face] - it shows very much pain. Point to the face that shows how much you hurt [right now]."Score the chosen face 0, 2, 4, 6, 8, or 10, counting left to right, so '0' = 'no pain' and '10' = 'very much pain.' Do not use words like 'happy' and 'sad'. This scale is intended to measure how children feel inside, not how their face looks.Permission for Use. Copyright of the FPS-R is held by the International Association for the Study of Pain (IASP) ©2001. This material may be photocopied for non-commercial clinical, educational, and research use. Sources. Hicks CL, von Baeyer CL, Spafford P, van Korlaar I, Goodenough B. The Faces Pain Scale – Revised: Toward a common metric in pediatric pain measurement. Pain 2001;93:173-183. Bieri D,Reeve R, Champion GD, Addicoat L, Ziegler J. The Faces Pain Scale for the self-assessment of the severity of pain experienced by children: Development, initial validation and preliminary investigation for ratio scale properties. Pain 1990;41:139-150.
  • “The longer I live, the more I realize the impact of attitude on life. Attitude, to me, is more important than facts. It is more important than the past, the education, the money, than circumstances, than failure, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for that day. We cannot change our past... we cannot change the fact that people will act in a certain way. We cannot change the inevitable. The only thing we can do is play on the one string we have, and that is our attitude. I am convinced that life is 10% what happens to me and 90% of how I react to it. And so it is with you... we are in charge of our Attitudes.” --Charles R. Swindoll quotes (American Writer and Clergyman, 1934)
  • Hope: framing itMy aging clients feel much hope is gone: their friends are dead, they have nothing left to do, their journey is over.False hope is a truly evil thing. Physicians do not help some patients in this regard.At the end of life, there is work to do. Making amends, talking to loved ones, saying goodbyes. I was sad that I did not know how close my mother was to death. All the old photos, the memories that were alive in her were gone, and died with her. I wanted to relive some of them before her death. It was not to be.I now work with hospice and palliative clients to help them have hope every day, in a different way.
  • My mom's cancer framed her life in the last few years. She fought it viciously. She could not act as she had: unconditional love, thinking only of others, and learned to fight for herself. Somehow, who no longer thought that any of us could help her and were, in fact, not acting in her best interests. It was a tough time in our relationship. I am only beginning to understand it.
  • Life Review in Critical Care: Possibilities at the End of LifeWe’re all perfect and we’re allowed to make mistakes.
  • An autobiographyhelps a senior realize their life lessons. It shows Respect for a life well-lived.
  • Denied Boost, in hospital: told to eat despite dr. orders
  • Room 217.ca
  • Dignity Therapy:  Final Words for Final Days by Harvey Max ChochinovOxford University PressDecember 2011, $49.95Hardcover, 224 pages

Transcript

  • 1. Death With Dignity:Dignity-conserving practices Jennifer JilksAuthor: Living & Dying in Dignity 1
  • 2. Patient advocate & Volunteer 2
  • 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. 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. Barriers to a good death 5
  • 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. 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. 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. A good death• One in which the four dimensions of good death are met:1. Physical2. Spiritual3. Social4. Emotional/psychological needs 9
  • 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. 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. 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. Pain Management Forms 15
  • 14. 16
  • 15. If we frame our lives with hope… 17
  • 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. A good death 19
  • 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. 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. 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. 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. Life Review 24
  • 23. Life ReviewDad with his sister, Irene (D. 2011) 25
  • 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. 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. 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. More information available here:• ontarioseniors.blogspot.com 29
  • 28. 8. Resources $20 30