1. Palliative Care Overview And Concepts
Mike Harlos MD, CCFP(PC), FCFP
Professor and Section Head, Palliative Medicine, University of Manitoba
Medical Director, WRHA Adult and Pediatric Palliative Care

4. Lifetime Risk of Dying (%)
A SOBERING TRENDLINE
100 50
Lifetime Risk of Dying (%)
Dawn of Time
Timeline
Today

5. What Is Palliative Care?
Surprisingly difficult to define
In contrast to other areas of health care, it is not defined by:
body systems (e.g. cardiology, dermatology)
age (e.g. pediatrics, geriatrics)
care setting (critical care, emergency)
procedures done (anesthesiology, surgery)
Any diagnosis, any age, any location 5

6. Palliative Care is an approach to care which focuses on comfort and quality of life for those affected by life-limiting/life-threatening illness.
Its goal is much more than comfort in dying; palliative care is about living, through meticulous attention to control of pain and other symptoms, supporting emotional, spiritual, and cultural needs, and maximizing functional status. 6

7. Elements of Palliative Care
Arguably, these should be core elements of all health care
attention to comfort and quality of life
care is grounded in the “personhood” of the patient
who they are (or perhaps who they wish they had been, or who they hope to be)
their values, priorities, goals
consideration of the impact of the illness on family, friends, community
supporting involved health care providers with the emotional, ethical, and technical complexities of care
Palliative care includes the above, with the added context of a life-limiting illness

8. A palliative approach should be a thread in the tapestry of all health care - how dominant the thread is depends on the context, goals of care

9. PHYSICAL
PSYCHOSOCIAL
SUFFERING
EMOTIONAL
SPIRITUAL

10. “Thank you for giving me aliveness”
Jonathan – 6 yr old boy terminally ill boy
Ref: “Armfuls of Time”; Barbara Sourkes

11. Common Myths & Misunderstandings About Palliative Care
Palliative Care is when nothing further can be done
If I accept Palliative Care, nothing further will be done
Palliative Care = giving up hope
It should only be considered at the very end of life
Palliative Care involves hastening dying
Palliative Care is a place (rather than an approach)
Palliative Care is for cancer only
Palliative Care is just for old people 11

12. Potential Palliative Conditions
“The Usual Suspects” – progressive life-limiting illness
Incurable cancer
Progressive, advanced organ failure (heart, lung, kidney, liver)
Advanced neurodegenerative illness (ALS, Alzheimer’s Disease)
Sudden fatal medical condition
Acute stroke
Withholding or withdrawing life-sustaining interventions (ventilation, dialysis, pressors, food/fluids…)
Trauma – e.g. head injury
Ischemic limbs, gut
Post-cardiac arrest ischemic encephalopathy
etc…

13. Potential Palliative Care Interventions
Generally
Not Palliative
Palliative
Variable
Support
CPR
Emotional
Spiritual
Psychosocial
Ventilation
Transfusions
Infections
Highly
burdensome
interventions
Control of
Hypercalcemia
Pain
Dyspnea
Nausea
Vomiting
Tube Feeding
Dialysis

14. Increase capacity through education, advocacy,
Formal
Program
Palliative Care as a
philosophy of care
Resources
Increase capacity through education, advocacy,
partnerships

15. WRHA Palliative Care Program

16. Palliative Care Program
Two streams of service delivery:
Registration on Program
Consultative Services

18. Registration on Program
Patients can be “registered” on the Palliative Care Program if they meet program criteria:
Prognosis of less than 6 months
No longer receiving aggressive treatment which requires on-going monitoring for and treatment of serious complications
Have chosen a comfort-focused approach including a decision to decline attempted resuscitation

19. Registration on Program
Once registered with the program, patients are eligible for:
Case management through Palliative Care Coordinator
Access to Community Palliative Care Nursing 24/7
Palliative Care Nurses have access to Palliative Care Physician
Admission to Palliative Care Units (PCU) and Hospice – if bed available
Enrollment on Provincial Palliative Care Drug Access Program

20. Consultative Services
Available to anyone with a life limiting illness in any care setting for symptom management, psycho-social support or assistance with discharge planning
Consultation services are provided by inter-professional team members including:
Palliative Care Physician
Palliative Care Clinical Nurse Specialist
Psycho-social Support Specialist

21. Acute Palliative Care Units
St. Boniface Hospital
15 bed unit
Access to tertiary care services
Riverview Health Centre
30 bed unit (2 beds currently closed)
Long term care facility

22. Acute Palliative Care Units (PCU)
Admission to PCU for symptom issues (physical, psycho-social, caregiver)
Admissions managed centrally by PC program staff
Bed management guidelines
Once symptoms are controlled, actively discharge to appropriate site
Approximately 75% of patients die on PC unit
Approximately 20% of patients are discharged home from Palliative Care Units
Approximately 5% are transferred to Hospice or LTC

23. Hospice Hospice is appropriate when: Symptoms well controlled
Care needs are not complex
Prognosis of 1 – 3 months
Patients cannot or do not wish to be cared for in the community

24. Hospice settings in WRHA
Grace Hospice
12 beds in stand alone facility near Grace hospital
RN staffing 24/7
Limitations in care that can be provided
Jocelyn House
4 beds in split-level home in St. Vital
Staffing – LPN/HCA with RN nurse manager

25. Care at Home
Majority of patients on Palliative Care program are in the community
Palliative patients in community have same service limitations as all Home Care clients
HCA and PSW services provided by Home Care Program
Families/caregivers must be very involved in providing care

26. Community Teams:
Community Nurses
CNS MD
Coordinator
Psychosocial

27. How to contact Palliative Care Program
One number to call if you have questions or need a consultation during business hours:
Do not page Palliative Care team members directly or leave messages regarding consults on their office phones.

28. How to contact Palliative Care Program
Physician to physician consultation available 24 hours a day – 7 days a week:
204 –

29. Medical Assistance in Dying (MAID)
A Brief Overview For Discussion

44. Sit Down, Lean In
Connect, acknowledge, validate – the expression of suffering and despair should be a show-stopper – “Sit down”
What is happening in this person’s life that leads them to feel they would rather not be alive? – Explore, “Lean In”

45. Connecting – “Sitting Down”
We all have the skills, and the obligation, and the time, to connect – to metaphorically “sit down”
the pause may be brief, the connection may be momentary yet meaningful and impactful if it is sincere
may be as simple as acknowledging the difficult situation and committing to help with it
E.g.
physician in a busy clinic
patient transport staff
housekeeping staff

46. Connecting You’re a person, your patient is a person
you almost certainly have thoughts/worries/fears about death and dying, as do they
you almost certainly have experienced loss, as they now are
This is your foundational qualification – your “admission ticket” to the conversation; your credentials for having a role
Your profession provides an added layer of technical information and skill to help explore suffering, but without connecting as a person you cannot effectively provide support

47. Exploring – “Leaning In”
impacted by skill sets, scope of practice, time constraints, environment
may need expertise of psychosocial and/or specialists spiritual care
exploring doesn’t mean “fixing the problem” or “talking out of MAID”

48. Advance Care Planning Considerations And Conversations About Health Care Choices In Serious Illness

49. This is the “what” stuff – the involved health care team is usually (but not always) more knowledgeable about details of clinical options
This is the “who” stuff. People are the experts in their own “who” stuff
Don’t forget that health care providers bring their own personal “who” stuff to the situation as well

50. Anatomy of Decision Making
Context forms the background on which decisions are considered… past experiences, present circumstances, anticipated developments
Information is the foundation on which decisions are made
Clinical information – facts, numbers; the “what”
Values / belief systems / ethical framework; the “who”… this includes the patient/family and the health care team; we each bring who we are to the situation
Goals are the focus of decisions – dialogue around health care decision (or any decision, for that matter) should be framed in terms of the hoped-for goals
Communication is the means by which information is shared and discussion of goals takes place

51. How Can I Start The Conversation Proactively?
With difficult conversations, the hardest part is starting them; once they get going they tend to take their own direction.

52. Potential Ways To Start Conversations
“Do you ever wonder about… ?”
“It seems as though there have been some changes in the last little while. Have you noticed that?”
“Sometimes people in such situations have already thought about what they would want if…. Is this something that you’ve thought about for yourself?”

53. Patient/Family Understanding and Expectations Health Care Team’s
Sometimes it seems that the health care team and patients/families are in two separate rooms – the patient/family in the “don’t get it” or “won’t accept it” room and the health care team in the “we know what’s coming” room
What
if…?
Patient/Family
Understanding and
Expectations
Health Care Team’s
Assessment and
Expectations
Common ground– the scary “what-if?...” territory

54. Displacing the Decision Burden
“If he could come to the bedside as healthy as he was a month ago, and look at the situation for himself now, what would he tell us to do?” Or
“If you had in your pocket a note from him telling you that to do under these circumstances, what would it say?”
Family and other substitute decision makers can find it very burdensome to be asked what they would like done for their loved one. By re-phrasing such questions such that the family is asked how the patient would guide care if able to do so, the burden of such decisions is redirected back to the patient; the family is acting as a messenger of the patient’s wishes. Often families will indicate that the patient would want comfort focused care only.
This approach to off-loading the family of the direct responsibility for difficult health care choices can be very helpful. 54

55. Life and Death Decisions?
Families may feel as though they are being asked to decide whether their loved one lives or dies – i.e. to choose life/death
It may help to remind them that the underlying illness itself is not survivable – no decision they make can change that
“I know that you’re being asked to make some very difficult choices about care, and it must feel that you’re having to make life-and-death decisions. You must remember that this is not a survivable condition, and none of the choices that you make can change that outcome.
We know that his life is on a path towards dying… we are asking for guidance to help us choose the smoothest path, and one that reflects an approach consistent with what he would tell us to do.”
Many of the choices presented to families in the context of end-of-life circumstances can result in them feeling as though they are deciding whether or not there loved one lives or dies. It can be helpful to reaffirm that the underlying condition is not survivable, and that none of the choices that they make can change that… they are being asked for input that will help make sure that the care provided is consistent with how their loved one would have guided it, while ensuring that comfort is addressed.
Such scenarios can sometimes be described as the illness being a play whose script has been written and which cannot be changed… we are the stage hands whose role is to ensure that it unfolds with as much comfort and dignity for the patient as possible. 55

56. The Temptation of Treatability
In general, people do not die of the underlying life- limiting condition, but from its complications – pneumonia; sepsis; bleeding; organ failure; etc.
Families may say “We know he is going to die from his cancer, but we can’t just let him die from pneumonia – people don’t die from pneumonia these days”
You can find yourself being drawn by the “temptation of treatability” into a course of micromanaging the dying process that would have otherwise unfolded naturally, predictably, and usually calmly 56

58. Goal-Focused Approach To Decisions
What are the goals of what is being considered?
Whose goals are they?
How and when will success in achieving those goals be assessed?
Things that work
Things that don’t work
Things that might work
Goals achievable and consistent with standard of medical care
Proceed if desired by patient or substitute decision maker
Goals not achievable, or inconsistent with standard of medical care
Discuss; explain that the intervention will not be offered or attempted.
If needed, provide a process for conflict resolution:
Mediated discussion
2nd medical opinion
Ethics consultation
Transfer of care
Uncertainty RE: Outcome
Consider therapeutic trial, with:
clearly-defined target outcomes
agreed-upon time frame
plan of action if ineffective
Interventions whose goals are clearly achievable and consistent with an accepted standard of medical care will generally be pursued if desired by the patient or substitute decision maker.
Interventions whose goals cannot possibly be achieved (such as CPR in the context of multisystem failure, where the heart ultimately stops beating only because of the overwhelming nature of the patient’s overall condition), or which do not meet an accepted standard of medical care (such as highly toxic unproven therapies) should not be attempted, and the reasons for this explained to the patient and family. If needed, a process for conflict resolution can be offered such as mediated discussion, 2nd medical opinions, and ethics consultation.
There is often uncertainty about whether the goals of an intervention can possibly be achieved. This is particularly the case when the hoped-for outcomes are subjective and experiential, such as whether tube feeding will result in improved energy and well-being in a patient with advanced esophageal CA and obstructive symptoms, or whether transfusing a patient with moderate anemia in the terminal phase of leukemia will improve energy and dyspnea. In such circumstances, it is reasonable to undertake a trial of the intervention, to see if it has the hoped-for effects. In such therapeutic trials, it is important to have the three following components:
Clearly-defined target outcomes, and means to assess them
An agreed-upon time frame during which to assess the effectiveness
A plan of action in the event that the intervention is not effective.
For example, in a patient with advanced metastatic esophageal CA and obstructive symptoms, it may be difficult to know how much of the weakness and functional decline is due to the overall effect of the illness vs. the nutritional compromise caused by the obstructive symptoms. In such situations, there may be a decision to undertake a trial of tube feeding for two weeks, with the target outcomes being improved energy, well-being, and functional status. Note that some of these outcomes will require the patient’s assessment, and to some there can be objective assessment of functional status. If the treatment is not effective, consideration may be given to withdrawing the feeding tube if that is the consensus decided upon prior to the trial. 58

59. Whose role is it to discuss ACP/Goals of Care?

60. “Planning for Care In Advance”
2 Formal Processes
Advance Care Planning
Consensus-based process
Patient/family/SDM* and Health Care Team
WRHA Policy – not a provincial initiative; no related legislation
Can be done if patient not able to participate
cognitive impairment
children
* SDM = Substitute Decision Maker
Health Care Directive
document outlining care expectations
supported by provincial legislation
16+ yrs, competent
can name proxy
can be made on any piece of paper
helps inform the ACP process, but not required for ACP

61. Resuscitation Medical Comfort
The three ACP levels are simply starting points for conversations about goals of care when a change occurs
Comfort
Medical
Resuscitation 61

62. Some Overarching Principles Of Opioid Use In Palliative Care
doses proportionate to the degree of distress are safe
anticipate and preempt predictable (“incident”) pain
dose increases 10% - 100%, depending on the context; usually should achieve steady state (5 half-lives) before increasing dose
IV, subcut administration bypass first-pass metabolism in the liver, and doses usually ½ the po dose
short-acting opioids (typically morphine, hydromorphone) should be used during dose titration and when pain is unstable

63. Determining The Correct Opioid Dose
Not
Enough
Too
Much
Somewhere in here
i.e. the opioids are titrated proportionately to achieve the desired effect

64. Breakthrough Doses
usually start with 10-20% of total daily dose, or equal to the q4h dose
the correct dose is the one that works
prn interval for breakthroughs should reflect pharmacology – i.e. when is it reasonable to repeat? (enteral 1 hr; subcut 30 min; IV min; transmucosal min)
if you want to limit the # breakthrough doses due to safety concerns, do so by limiting the # doses over a period, but keep the reasonable interval
e.g. “q1h prn, up to 3 doses per shift; call if 3 consecutive breakthrough doses ineffective”

65. Stacking Doses
repeat
Opioid
Level
repeat
Time

66. Opioids in Dyspnea Uncertain mechanism
Comfort achieved before resp compromise; rate often unchanged
Often patient already on opioids for analgesia; if dyspnea develops it will usually be the symptom that drives the need for titration
Dosage should be titrated empirically
May need rapid dose escalation in order to keep up with rapidly progressing distress

67. Common Concerns About Aggressive Use of Opioids at End-Of-Life
How do you know that the aggressive use of opioids doesn't actually bring about or speed up the patient's death?
“I gave the last dose of morphine and he died a few minutes later… did the medication cause the death?” 67

68. Literature: the literature supports that opioids administered in doses proportionate to the degree of distress do not hasten death and may in fact delay death
Medication history: usually “the last dose” is the same as those given throughout recent hours/days, and was well tolerated
Clinical context: breathing patterns usually seen in progression towards dying (clusters with apnea, irreg. pattern) vs. opioid effects (progressive slowing, regular breathing; pinpoint pupils) 68

69. Changes not related to opioids…
Cheyne-Stokes
Rapid, shallow
“Agonal” / Ataxic

70. In circumstances of excessive opioid dosing, there is virtually always as associated clinical context (aggressive medication titration, complex opioid conversions) and the following physical signs:
pinpoint pupils
gradual slowing of the respiratory rate
breathing is deep (may be shallow) and regular