Dying, Dignity and Palliative End-of-Life Care | Dr. Harvey Chochinov

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A presentation made by Dr. Harvey Chochinov during the free public forum "How to Start the Conversation: a discussion on preparing for end-of-life care" on January 9, 2014 at the United Steelworkers …

A presentation made by Dr. Harvey Chochinov during the free public forum "How to Start the Conversation: a discussion on preparing for end-of-life care" on January 9, 2014 at the United Steelworkers Hall in Sudbury, Ontario.

Dr. Harvey Chochinov is Distinguished Professor of Psychiatry at the University of Manitoba, Director of the Manitoba Palliative Care Research Unit at Cancer Care Manitoba, and the holder of the only Canada Research Chair in Palliative Care.

Learn more about the forum at http://www.hsnsudbury.ca/events

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  • Thomas Aquinus (lived in the early 13th century) was an Italian Dominican priest of the Roman Catholic Church. In Catholisism, he is considered the Church's greatest theologian and philosopher.
    - He introduced the notion of personal dignity, or the understanding that the person is a dignity.
    - Dignity is essential to the existence of the individual person; it is what the person is before anything else, it is what identifies it.
    - He argued that dignity can be lost if human beings deviate form the rational order by sinning, and that it is not necessarily bad to kill sinners (don’t mess with Thomas)
  • Immanuel Kant was a German philosopher from Konigsberg in Prussia who researched, lectured and wrote on philosophy and anthropology near the end of the 18th century.
    - Everything has either a price or a dignity. Whatever has a price can be replaced by something else as its equivalent; on the other hand, whatever is above all price, and therefore admits of no equivalent, has a dignity.
    - He suggested that there were things that should not be discussed in terms of value, and that these things could be said to have dignity.
    And so, to summarize, (Sulmasey Jesuit Priest and Palliative Care Physician)
    1. Attributive dignity – when it refers to the worth or value we attribute to individuals by virtue of the circumstances in which they find themselves, or who possess various characteristics or abilities, thus bestowing dignity on them
    Being sick can rob you of your station in life, make you less productive , forces dependency upon others; assistance with ambulation, bathing, dressing, toileting, and feeding.
    2. Intrinsic dignity ‘the value that humans have simply by virtue of the fact that they are human beings’; not determined by social standing, power or abilities.
    3. Inflorescent dignity – ‘used to refer to individuals who are flourishing as human beings’ e.g. ‘she handled the situation with dignity’
  • I make no claims of being anywhere near as smart as my philosophical predecessors; and the approach I’ve taken has been relatively simplistic
    Took me a long time to sit for this portrait …. I would say the artist caught a reasonable likeness.
    We went to the bedside of dying patients … asked them about dignity
  • Seeing some for who they are
    Appreciate them for what they are or were
    Can’t always enhance attributional dignity; but we can affirm intrinsic dignity
  • For some, vulnerability is a cage that traps them inside of their bodies and the all too confining perceptions of others.
    Another way of thinking about vulnerability is as a lens, through which differences can be appreciated and diversity embraced. Through this lens, we can appreciate that vulnerability comes from a feeling of being at risk and is part of being human. It is constant and universal, given that all bodies are vulnerable and subject to the uncertainties of being human.
    This perspective will find us challenging basic precepts, like what is normal?; and normal-centricity can inflict harm.
    Autonomy may be a strongly held value within Western culture, yet, Dependency, like vulnerability, is an innate part of the human condition … a normal-centric lens would have us believe that dependency is wrong, an affront to personhood …. A vulnerability lens would have us appreciate that dependency, like hunger, sadness, fatigue, is a simple fact of being alive.
    Finally, you might want to consider vulnerability as a mirror. In seeing your own reflection, you may discover that, like your patients, your path is no less fragile, no less tenuous and no less uncertain.
    TAB story
  • People who are treated like they no longer matter will act and feel like they no longer matter. In other words, patients look at healthcare providers as they would a mirror, seeking a positive image of themselves and their continued sense of worth.
  • In turn, healthcare providers need to be aware that their attitudes and assumptions will shape those all-important reflections.
  • Might an assumption of poor quality of life in a patient with longstanding disabilities lead to the withholding of life sustaining choices?
    The end of this month will mark the 3rd anniversary of my sister Ellen’s death
    Born with CP, she was a life long wheelchair user
    Several years before she died, respiratory fail
    Intensive care/delicate moment when a decision came to discuss if she might need intubation
  • - Treat contact with patients as you would any potent and important clinical intervention・
    - Professional behaviours towards patients must always include respect and kindness・
    - Lack of curative options should never rationalise or justify a lack of ongoing patient contact
  • ・Always ask the patient's permission to perform a physical examination
    - Although an examination may be part of routine care, it is rarely routine for the patient, so always, take time to set the patient at ease and show that you have some appreciation for what they are about to go through ("I know this might feel a bit uncomfortable"; "I'm sorry that we have to do this to you"; "I know this is an inconvenience"; "This should only hurt for a moment"; "Let me know if you feel we need to stop for any reason"; "This part of the examination is necessary because . . .")・
    Limit conversations with patients during an examination (aside from providing them with instruction or encouragement) until they have dressed or been covered appropriately
  • ・Act in a manner that shows the patient that he or she has your full and complete attention
    ・Always invite the patient to have someone from his or her support network present, particularly when you plan to discuss or disclose complex or "difficult" information・
    Personal issues should be raised in a setting that attempts to respect the patient's privacy・
    When speaking with the patient, try to be seated at a comfortable distance for conversation, at the patient's eye level when possible
    Given that illness can be overwhelming, offer patients and families repeated explanations as requested
    Present information to the patient using language that he or she will understand; never speak about the patient's condition within their hearing distance in terms that they will not be able to understand
    Always ask if the patient has any further questions and assure them that there will be other opportunities to pose questions as they arise
  • Besides seeing ourselves differently, how can we see our patients differently:
    PDQ = Patient dignity Question = What do I need to know about you as a person in order to take the best care of you that I can?
    (If you get to see me, I get to pick the lenses you will wear).
    2 years, will enroll 100 participants 50/50 …. Funded by CCSRI
    Describe protocol
    Conversation; 2. Summarize; 3. Read back to confirm accuracy and permission on chart (nearly everyone has given permission to place this on the chart)
    Patient Dignity Question StudyPT is a young-in-spirit 67-year-old woman who loves the art of cooking, likes to read a good book (not trash) and likes to help people. She says her friends would describe her as smart, kind, gentle, and poised. P likes to be kept informed about her care but not patronized or treated with condescension. At times she felt there was a mismatch between her goals and those of the individual health professional or the "system". P recognizes that many people do want to remain at home to die but that was not her goal. She wants her care providers to understand that when a person comes to the point where they know they are not going to get better and that they are dying, they should not have to struggle while remaining in their home. P's primary wish is that she be helped to achieve her goal, not the health professional's goal or the system's goal. Currently, her goal is to move to the Hospice.R says people may make assumptions about him when they see his tattoos and learn that he loves motorcycles. He says people on his street worried that he and his kids were members of a motorcycle gang because they all rode motorcycles. They weren't. He had a lovely garden and flowers. He worked for the city for 30 years and also ran a trucking business for 12 years while his wife ran a day care. They were busy people, he remarks. He admits that he used to have an "attitude problem"; he was an "agitator". He says that knowing you're sick changes your attitude. "I woke up late to the fact that my way is not always the right way."The family agreed that it is important for Healthcare Providers to take the time to get to know a little about their dad, his history and personality. H takes a lot of pride in what he has been through.  For example, in his 93 years he went through the depression, and was shot 3 times during the Second World War.   He is easy going, with a "wild sense of humour".   Sometimes his joking might sound abrupt but his family know that is his way of saying he loves them. "You definitely know he cares when he takes a shot at you."  H is described as strong willed and stubborn, someone who appreciates things being done on time and in an orderly way.  He likes the things on his bedside table to be placed on the right - the back scratcher, Kleenex and water. But he likes things on his dinner tray placed to the left.  H is quite literal in terms of time - if someone says they will be right back - he expects they will be.H has loss of hearing in both ears and generally wears a hearing aide in his left ear. He is also always cold - no matter what the temperature.  His skin is very sensitive and when his clothing or the bed clothing gets bundled under him it is uncomfortable and he is not always able to fix it alone. ******************************************************************************Mrs. F. says that because of the residential school, she always had a hard time trusting people. She in fact moved 82 times so as not to let anyone get too close to her. While this has gotten better over time, she still struggles with being able to trust people. She wants to, but it is hard for her. She sometimes worries that she won't be told the whole truth, or that people will see her as not being deserving of the whole truth. She appreciates people being friendly towards her, but is frightened of authority figures. 'Authority scares me, but I'm not as bad as I used to be'.        
  • How do we engage in dignity conserving care
    See ourselves differently … with humility; helps us see ourselves as not so different than our patients
    See our patients differently … PDQ … they choose the lens
    Help our patients see themselves differently … by bearing witness to their intrinsic dignity; providing them affirmation of their personhood.
    Dignity therapy
    Explain
  • I used to say VH was the best kept secret in health care. Then I went to the Ontario Palliative Care Association’s conference at the end of April and fully 90% of participants who visited us at the booth said that not only had they heard of VH, but they used it frequently and loved it! Quite frankly I was shocked by the saturation level we’d achieved in Ontario – but obviously very pleased. There is still much work to do and given the critical role at Community Care Access Centres serve for Ontarians, I’m very pleased to show you the scope of features and new offerings on the site.
    By way of background, the idea for Virtual Hospice and the site’s first iteration - was developed by experts from across the country – Harvey Max Chochinov, Larry Librach, Alex Jadad, Jay Lynch to name a few – to address a patchwork of information and support on palliative and end of life care and to provide equal access regardless of time or geography to trusted information, support and access to palliative care professionals. The site was originally launched in 2004 as a regional pilot project and it has grown to be Canada’s trusted online source for palliative care information and support.
    The lifespan for a website is 4-5 years so when I joined VH in 2007 it was on life support. We launched the redeveloped site in 2009 with new features and expanded content. And the site has grown steadily in scope and usage.
    We are funded by the Canadian Partnership Against Cancer and the Winnipeg Regional Health Authority which covers the costs of our Nurses and one physician.
    We are staffed by an award-winning multidisciplinary clinical team of palliative care physicians, CNSs, a psychosocial consultant, spiritual care advisor, ethicists and pediatric PC specialists.
    Combined, our clinical team has over 150 years of experience in PEOLC. Our operating budget is $600,000.
    We have been ranked as one of the best health websites in the country by the Cdn Association of Health Libraries. A couple of years ago CPAC commissioned a survey of users and stakeholders of its cancerview.ca website – Virtual Hospice was identified as the most useful feature on their site by more than 80% of respondents.

Transcript

  • 1. Dying, Dignity and Palliative End-ofLife Care Harvey Max Chochinov OM MD PhD FRSC Canada Research Chair in Palliative Care Director, Manitoba Palliative Care Research Unit Distinguished Professor, Department of Psychiatry University of Manitoba, CancerCare Manitoba
  • 2. Stability of Will to Live with Pain in an 80 Year-old Patient with Colorectal Cancer 60 -- Will to Live Will to Live & ESAS Score 50 40 30 20 10 0 0 50 100 150 200 Observation Number (two per day) 250 300 Lancet. 1999;354:816-9.
  • 3. Stability of Will to Live with Pain in an 80 Year-old Patient with Colorectal Cancer 60 Will to Live & ESAS Score 50 Will to Live ---- Pain 40 30 20 10 0 0 50 100 150 200 Observation Number (two per day) 250 300 Lancet. 1999;354:816-9.
  • 4. Sense of Dignity • • • • • Desire for death (p < 0.0014) Loss of will to live (p < 0.013) Depression (p < 0.0084) Hopelessness (p < 0.020) Anxiety (p < 0.003) Chochinov et al. Lancet. 1999;354:816-9
  • 5. Sense of Dignity • Pain (p < 0.048) • Difficulty with bowel functioning (p < 0.026) • Physical appearance (p < 0.002) Chochinov et al. Lancet. 1999;354:816-9
  • 6. Sense of Dignity • Bathing (OR = 8.45 [1.50 to 47.70]; p < 0.016) • Dressing (OR = 2.79 [0.95 8.15]; p < 0.061) • Incontinence (OR = 3.47 [1.27 - 9.51]; p < 0.016) Chochinov et al. Lancet. 1999;354:816-9
  • 7. Chochinov et al. Social Science and Medicine 2002
  • 8. A: Attitude Dignity Conserving Care
  • 9. A Dignity Conserving Care: Attitude Care provider attitude has a profound influence on patients sense of dignity
  • 10. Dignity Model Questions N=211 # Variable % Agree or strongly agree 1 thinking how life might end 41.7% 2 distressing symptoms 53.1% 3 uncertainly regarding illness 59.2% 4 feeling depressed or anxious 59.7% 5 feeling your privacy has been reduced 65.9% 6 changes in physical appearance 66.4% 7 not being able to accept things the way 71.6% they are Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement S, Harlos M. Dignity in the terminally ill: revisited. J Palliat Med. 2006;9:666-72.
  • 11. Dignity Model Questions 8 not having a meaning spiritual life 73.7% 9 no longer feeling who you were 74.4% 10 not being able to mentally fight 74.5% 11 not being able to continue with usual routines 74.9% 12 feeling life no longer has meaning or purpose 75.1% 13 not being able to think clearly 77.3% 14 not being able to carry out important roles 78.5% 15 tasks of daily living 79.6%
  • 12. Dignity Model Questions 17 not feeling worthwhile or valued 81.4% 18 bodily functions 82.9% 19 not feeling you made a meaning or lasting 83.3% contribution 20 feeling you don't have control over your life 83.7% 21 feeling a burden to others 87.1% 22 not being treated with respect or understanding 87.1%
  • 13. B: Behavior Dignity Conserving Care
  • 14. C: Compassion Dignity Conserving Care
  • 15. Compassion…. “a deep awareness of the suffering of another, coupled with the wish to relieve it.”
  • 16. Pathways to Compassion • • • Humanities – Literature – Philosophy – Ethics – History – Religion Social sciences – Anthropology – Cultural studies – Psychology – Sociology The arts – Literature – Theater – Film – Visual arts
  • 17. D: Dialogue Dignity Conserving Care
  • 18. Personhood on the Clinical Radar “What should I know about you as a person to help me take the best care of you that I can?”
  • 19. Patient Dignity Question (PDQ) Mrs. F. says that because of the residential school, she always had a hard time trusting people. She in fact moved 82 times so as not to let anyone get too close to her. While this has gotten better over time, she still struggles with being able to trust people. She wants to, but it is hard for her. She sometimes worries that she won’t be told the whole truth, or that people will see her as not being deserving of the whole truth. She appreciates people being friendly towards her, but is frightened of authority figures. ‘Authority scares me, but I’m not as bad as I used to be’.
  • 20. n =126 Patient/Family Perception Number of PDQs Percentage The PDQ accurate 124 99% Permission to place on chart 121 97% Wanted a copy 95 76% Information Important for HCP 107 93% Could affect my care 81 78% Would recommend it for others 117 99%
  • 21. Effect of PDQ on Health Care Provider n =292 responses (137 Health care Providers) Effect of PDQ on Health Care Provider Strongly disagree/agree Neutral Agree/ strongly agree Learn something new from PDQ 24 (8.3%) 4 (1.4%) 262 (90%) Was emotionally affected by PDQ 40 (13.7%) 66 (23.0%) 187 (63.8%) PDQ influenced attitude 56 (19.3%) 73 (25.2%) 161 (55.5%) PDQ influenced care 75 (26.6%) 82 (29.1%) 125 (44.3%) PDQ influence respect 52 (18.3%) 96 (33.8%) 136 (47.9%) PDQ influenced empathy 37 (13.2%) 78 (27.9%) 165 (58.9%) PDQ affected connectedness 29 (10.4%) 74 (26.5%) 176 (63.1%) PDQ enhanced satisfaction providing care 28 (12.6%) 85 (38.1%) 110 (49.3%)
  • 22. By the numbers 1000 1 89 per cent visitors highly satisfied visits per day 1,550 including Harvard, Canada AM silver medal 62,500+ s on YouTube 684 Followers on twitter 250+ view 5000+ “likes” on Facebook countries pages