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Medical Aspects of Palliative Care –
A Conversation With Your Physician
Andrew C Knight, MD
Sudbury End-of-Life Forum
February 6, 2014
Palliative Care
• an approach to care (culture of caring)
• not restricted to a particular location
• can be combined with active care of any
patient with life limiting or life threatening
illness
• “What should I know about you as a person to
help me take the best care of you that I can?”
Harvey Chochinov, MD
• “If you don’t know your options, you don’t
have any!”
Lauren Vary
• Why introduce palliative care early?
Temel et al:

• newly diagnosed metastatic… lung cancer
(n=151)
• early palliative care consultation or standard
end of life referral
Patients with early palliative care consultation had:
…

•

less depression

•
•
•
•
•

less anxiety
better quality of life
received less aggressive treatments
lower health care costs
& lived 3 months longer!
Temel J, et al. Early Palliative Care for Patients with Metastatic
Non–Small Cell Lung Cancer. NEJM 2010; 363:733-42
• 1193 pts, newly diagnosed metastatic lung or
colorectal cancer (stage IV)
• alive 4 months later, receiving chemotherapy
• questionnaire to assess prevalence of belief
treatment curative:
lung: 69%
colorectal: 81%
• serious misunderstanding
• may compromise ability to make informed
treatment decisions
• decisions be inconsistent with preferences or
goals of care
• MDs may be able to correct misperception,
often at cost of patient’s satisfaction
• could early palliative care consultation
improve understanding of prognosis?
Early Palliative Care
•
•
•
•
•

better symptom management
may live longer
better quality of life & care
lower rates of depression
improved understanding of prognosis &
less likely to receive chemotherapy at EOL
The Pathway to Death
( in Advanced Cancer)
•
•
•
•
•
•
•
•
•

weight loss (cachexia, NOT starvation)
reduced appetite / reduced nutritional intake
increasing weakness / reduced activity
reduced fluid intake / reduced urine output
ineffective cough / swallowing / weakened voice
confusion (delirium), reduced alertness
airway secretions
cooling of extremities, mottling of skin
± bowel / bladder incontinence
Cardiac Arrest
• cessation of cardiac activity & respirations
• failure of cardiovascular & respiratory centres
located in brain stem
• usual consequence of multisystem failure
– liver & kidney failure; acid loading; high potassium
levels

• impaired cellular function
• cardiac arrest is final result
• CPR futile endeavour
(CPR may not be futile if cardiac arrest in trauma / cardiac disease)
Preparing for Death At Home
•
•
•
•
•
•
•
•
•
•
•

supportive spouse / family
adaptable physical surroundings
CCAC & nursing services
DNR status confirmed
in home pronouncement
symptom relief kit (SRK)
effective pain & symptom management
24/7 support – nursing & medical
back-up plan (hospital / hospice / NOT ER)
DO NOT CALL 911!
funeral arrangements
Barriers
•
•
•
•

fragmented home care services
no 24/7 support (crisis management)
family dysfunction / caregiver incapable
unendurable symptoms1: N=120, 52.5% @ 48hrs
– delirium
– severe shortness of breath / low oxygen levels
– bowel obstruction (persistent vomiting)
– severe pain

1Ventafridda,

1990
Cancer Pain & Associated Symptoms (n=1635)
•
•
•
•
•
•
•
•

pain
insomnia (59%)
anorexia (48%)
constipation (33%)
sweating (28%)
nausea (27%)
short of breath (24%)
swallowing difficult (20%)

Grond et al, 1994

•
•
•
•
•
•
•
•

neuropsychiatric (20%)
vomiting (20%)
urinary (14%)
indigestion (11%)
weakness (10%)
diarrhea (6%)
itching (6%)
skin (3%)
Potential Interventions
drug infusions (pain, sedation)
urinary catheter
oxygen
skin care
nasogastric tube
paracentesis / thoracentesis
Hot Button Issues
•
•
•
•

nutrition
hydration
airway secretions
pain pumps (patient controlled… but family
imposed)
• delirium
Organ Donation
• in cancer patients, restricted to corneal tissue
if other disqualifying conditions not present
• some exceptions (lymphomas, leukemias)
• for transplant, harvest within 12 hrs (& blood
sample)
• or teaching / research purposes
How long do I have to live?
• MDs frequently over-estimate survival
• survival rates apply to groupings of patients,
not individuals
• related complications & disease progression
unpredictable
• Surprise question: would you be surprised if
this patient would die in the next 6 to 12
months?
•
•
•
•
•

10,772 ESAS
7,882 PPS
Mean age: 65 years
Functional decline gradual from
70%
Rapid decline after 50% (last 2
– 3 weeks of life)

Mean PPS Score

Cancer patients
seen at Cancer
outpatient clinics
across Ontario

Time Before Death (in weeks)
Seow H et al. JCO 2011;29(9):1151-1158
Palliative Performance Scale (PPS)
ECOG

Functional Status PPS
Self-Care

Intake

Level of
Consciousness

100

Full

Normal activity
No evidence of disease

Full

Normal

Full

Full

Normal activity
Evidence of disease

Full

Normal

Full

Full

Normal activity with effort
Evidence of disease

Full

Normal/
Reduced

Full

70

Reduced

Unable to do normal work
Evidence of disease

Full

Normal/
Reduced

Full

60

Reduced

Unable to do house work
Significant disease

Occasional
Assistance

Normal/
Reduced

Full or
Confusion

50

Mainly
Sit/Lie

Unable to do any work
Evidence of disease

Considerable
Assistance

Normal/
Reduced

Full or
Confusion

40

Mainly in
Bed

As Above

Mainly
Assistance

Normal/
Reduced

Full or Drowsy
or Confusion

30

Stable

Activity & Evidence of
Disease

80

Transitional

Ambulation

90

0

%

Totally Bed
Bound

As Above

Total Care

Reduced

Full or Drowsy
or Confusion

20

As Above

As Above

Total Care

Minimal
Sips

Full or Drowsy
or Confusion

10

As Above

As Above

Total Care

Minimal/nil

Drowsy or Coma

1

2

End-of-life

3

4
Ma C, et al. Eur
J Cancer 2010

27
Interventions
• participants were randomized to receive usual care
or usual care plus facilitated advance care planning.
• advance care planning aimed to
– assist patients to reflect on their goals, values, and
beliefs;
– to consider future medical treatment preferences;
– to appoint a surrogate;
– and to document their wishes.
Conclusions
• “a coordinated, systematic model of patient centred
advance care planning using non-medical …
facilitators assists in identifying and respecting
patient’s wishes about end of life care, improves
such care from the perspective of the patient and the
family, and diminishes the likelihood of stress,
anxiety, and depression in surviving relatives.”
Family Members Responses –
Intervention Group
• “His death was really peaceful, and everyone knew what to
do.”
• “We had a clear plan so could just relax and enjoy time with
Dad.”
• “Even though we already knew what he wanted it was great
to be given the opportunity to talk about it and get it out into
the open.”
• “We felt really comfortable making decisions because we had
discussed it with him.”
• “He had a very peaceful death, just as it should have been and
I would like to thank all staff for this.”
Family Members Responses –
Control Group
• “He knew he was dying, and it was very hard for him. We
should have talked with him about it.”
• “He should have had more say. He couldn’t do the
rehabilitation. He knew he was dying, but the doctors didn’t
seem to get it.”
• “The hospital has a responsibility to talk with patients about
these things. My sister never got a say and that is wrong.”
• “They wouldn’t let her go. They kept doing tests and things
she would not have wanted.”
• “Mum didn’t want heroics. She knew she was dying. I was
horrified when I heard she got 45 minutes of CPR. She did not
want it. All anyone had to do was ask. I feel very hurt and hurt
for mum and my sister.”
“While I very much hoped not to die
in space….. Before my last space
flight..... I reviewed my will, made
sure my financial affairs and taxes
were in order, and did all the other
things you’d do if you knew you were
going to die. But that didn’t make me
feel like I had one foot in the grave. It
actually put my mind at ease and
reduced my anxiety about what my
family’s future would look like if
something happened to me. Which
meant that when the engines lit up
at launch, I was able to focus entirely
on the task at hand: arriving alive.”
(p 61)

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Early Palliative Care Improves Outcomes in Cancer Patients

  • 1. Medical Aspects of Palliative Care – A Conversation With Your Physician Andrew C Knight, MD Sudbury End-of-Life Forum February 6, 2014
  • 2. Palliative Care • an approach to care (culture of caring) • not restricted to a particular location • can be combined with active care of any patient with life limiting or life threatening illness
  • 3. • “What should I know about you as a person to help me take the best care of you that I can?” Harvey Chochinov, MD
  • 4. • “If you don’t know your options, you don’t have any!” Lauren Vary
  • 5.
  • 6. • Why introduce palliative care early?
  • 7.
  • 8. Temel et al: • newly diagnosed metastatic… lung cancer (n=151) • early palliative care consultation or standard end of life referral
  • 9. Patients with early palliative care consultation had: … • less depression • • • • • less anxiety better quality of life received less aggressive treatments lower health care costs & lived 3 months longer!
  • 10. Temel J, et al. Early Palliative Care for Patients with Metastatic Non–Small Cell Lung Cancer. NEJM 2010; 363:733-42
  • 11.
  • 12. • 1193 pts, newly diagnosed metastatic lung or colorectal cancer (stage IV) • alive 4 months later, receiving chemotherapy • questionnaire to assess prevalence of belief treatment curative: lung: 69% colorectal: 81%
  • 13. • serious misunderstanding • may compromise ability to make informed treatment decisions • decisions be inconsistent with preferences or goals of care • MDs may be able to correct misperception, often at cost of patient’s satisfaction • could early palliative care consultation improve understanding of prognosis?
  • 14.
  • 15. Early Palliative Care • • • • • better symptom management may live longer better quality of life & care lower rates of depression improved understanding of prognosis & less likely to receive chemotherapy at EOL
  • 16. The Pathway to Death ( in Advanced Cancer) • • • • • • • • • weight loss (cachexia, NOT starvation) reduced appetite / reduced nutritional intake increasing weakness / reduced activity reduced fluid intake / reduced urine output ineffective cough / swallowing / weakened voice confusion (delirium), reduced alertness airway secretions cooling of extremities, mottling of skin ± bowel / bladder incontinence
  • 17. Cardiac Arrest • cessation of cardiac activity & respirations • failure of cardiovascular & respiratory centres located in brain stem • usual consequence of multisystem failure – liver & kidney failure; acid loading; high potassium levels • impaired cellular function • cardiac arrest is final result • CPR futile endeavour (CPR may not be futile if cardiac arrest in trauma / cardiac disease)
  • 18.
  • 19. Preparing for Death At Home • • • • • • • • • • • supportive spouse / family adaptable physical surroundings CCAC & nursing services DNR status confirmed in home pronouncement symptom relief kit (SRK) effective pain & symptom management 24/7 support – nursing & medical back-up plan (hospital / hospice / NOT ER) DO NOT CALL 911! funeral arrangements
  • 20. Barriers • • • • fragmented home care services no 24/7 support (crisis management) family dysfunction / caregiver incapable unendurable symptoms1: N=120, 52.5% @ 48hrs – delirium – severe shortness of breath / low oxygen levels – bowel obstruction (persistent vomiting) – severe pain 1Ventafridda, 1990
  • 21. Cancer Pain & Associated Symptoms (n=1635) • • • • • • • • pain insomnia (59%) anorexia (48%) constipation (33%) sweating (28%) nausea (27%) short of breath (24%) swallowing difficult (20%) Grond et al, 1994 • • • • • • • • neuropsychiatric (20%) vomiting (20%) urinary (14%) indigestion (11%) weakness (10%) diarrhea (6%) itching (6%) skin (3%)
  • 22. Potential Interventions drug infusions (pain, sedation) urinary catheter oxygen skin care nasogastric tube paracentesis / thoracentesis
  • 23. Hot Button Issues • • • • nutrition hydration airway secretions pain pumps (patient controlled… but family imposed) • delirium
  • 24. Organ Donation • in cancer patients, restricted to corneal tissue if other disqualifying conditions not present • some exceptions (lymphomas, leukemias) • for transplant, harvest within 12 hrs (& blood sample) • or teaching / research purposes
  • 25. How long do I have to live? • MDs frequently over-estimate survival • survival rates apply to groupings of patients, not individuals • related complications & disease progression unpredictable • Surprise question: would you be surprised if this patient would die in the next 6 to 12 months?
  • 26. • • • • • 10,772 ESAS 7,882 PPS Mean age: 65 years Functional decline gradual from 70% Rapid decline after 50% (last 2 – 3 weeks of life) Mean PPS Score Cancer patients seen at Cancer outpatient clinics across Ontario Time Before Death (in weeks) Seow H et al. JCO 2011;29(9):1151-1158
  • 27. Palliative Performance Scale (PPS) ECOG Functional Status PPS Self-Care Intake Level of Consciousness 100 Full Normal activity No evidence of disease Full Normal Full Full Normal activity Evidence of disease Full Normal Full Full Normal activity with effort Evidence of disease Full Normal/ Reduced Full 70 Reduced Unable to do normal work Evidence of disease Full Normal/ Reduced Full 60 Reduced Unable to do house work Significant disease Occasional Assistance Normal/ Reduced Full or Confusion 50 Mainly Sit/Lie Unable to do any work Evidence of disease Considerable Assistance Normal/ Reduced Full or Confusion 40 Mainly in Bed As Above Mainly Assistance Normal/ Reduced Full or Drowsy or Confusion 30 Stable Activity & Evidence of Disease 80 Transitional Ambulation 90 0 % Totally Bed Bound As Above Total Care Reduced Full or Drowsy or Confusion 20 As Above As Above Total Care Minimal Sips Full or Drowsy or Confusion 10 As Above As Above Total Care Minimal/nil Drowsy or Coma 1 2 End-of-life 3 4 Ma C, et al. Eur J Cancer 2010 27
  • 28.
  • 29.
  • 30. Interventions • participants were randomized to receive usual care or usual care plus facilitated advance care planning. • advance care planning aimed to – assist patients to reflect on their goals, values, and beliefs; – to consider future medical treatment preferences; – to appoint a surrogate; – and to document their wishes.
  • 31. Conclusions • “a coordinated, systematic model of patient centred advance care planning using non-medical … facilitators assists in identifying and respecting patient’s wishes about end of life care, improves such care from the perspective of the patient and the family, and diminishes the likelihood of stress, anxiety, and depression in surviving relatives.”
  • 32. Family Members Responses – Intervention Group • “His death was really peaceful, and everyone knew what to do.” • “We had a clear plan so could just relax and enjoy time with Dad.” • “Even though we already knew what he wanted it was great to be given the opportunity to talk about it and get it out into the open.” • “We felt really comfortable making decisions because we had discussed it with him.” • “He had a very peaceful death, just as it should have been and I would like to thank all staff for this.”
  • 33. Family Members Responses – Control Group • “He knew he was dying, and it was very hard for him. We should have talked with him about it.” • “He should have had more say. He couldn’t do the rehabilitation. He knew he was dying, but the doctors didn’t seem to get it.” • “The hospital has a responsibility to talk with patients about these things. My sister never got a say and that is wrong.” • “They wouldn’t let her go. They kept doing tests and things she would not have wanted.” • “Mum didn’t want heroics. She knew she was dying. I was horrified when I heard she got 45 minutes of CPR. She did not want it. All anyone had to do was ask. I feel very hurt and hurt for mum and my sister.”
  • 34. “While I very much hoped not to die in space….. Before my last space flight..... I reviewed my will, made sure my financial affairs and taxes were in order, and did all the other things you’d do if you knew you were going to die. But that didn’t make me feel like I had one foot in the grave. It actually put my mind at ease and reduced my anxiety about what my family’s future would look like if something happened to me. Which meant that when the engines lit up at launch, I was able to focus entirely on the task at hand: arriving alive.” (p 61)

Notes de l'éditeur

  1. Ontario’s cancer system is unique because it has implemented two standardized assessmenttools population-wide to improve care: the Edmonton Symptom Assessment System (ESAS)measures severity of nine symptoms (scale 0 to 10; 10 indicates the worst) and the PalliativePerformance Scale (PPS) measures performance status (scale 0 to 100; 0 indicates death). Thisarticle describes the trajectory of ESAS and PPS scores 6 months before death.Patients and MethodsObservational cohort study of cancer decedents between 2007 and 2009. Decedents required 1ESAS or PPS assessment in the 6 months before death for inclusion. Outcomes were thedecedents’ average ESAS and PPS scores per week before death.ResultsTen thousand seven hundred fifty-two (ESAS) and 7,882 (PPS) decedents were included. Themean age was 65 years, half were female, and approximately 75% of assessments occurred incancer clinics. Average PPS score declined slowly over the 6 months before death, starting atapproximately 70 and ending at 40, declining more rapidly in the last month. For ESAS symptoms,average pain, nausea, anxiety, and depression scores remained relatively stable over the 6 months.Conversely, shortness of breath, drowsiness, well-being, lack of appetite, and tiredness increased inseverity over time, particularly in the month before death. More than one third of the cohort reportedmoderate to severe scores (ie, 4 to 10) for most symptoms in the last month of life.ConclusionIn this large outpatient cancer population, trajectories of mean ESAS scores followed two patterns:increasing versus generally flat. The latter was perhaps due to available treatment (eg, prescriptions)for those symptoms. Future research should prioritize addressing symptoms that worsenover time.J ClinOncol 29:1151-1158. © 2011 by American Society of Clinical Oncology