Medical Aspects of Palliative Care – A Conversation With Your Physician

Andrew C Knight, MDSudbury 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:– delirium – severe shortness of breath / low oxygen levels– bowel obstruction (persistent vomiting)– severe pain

1Ventafridda, 1990

N=120, 52.5% @ 48hrs

Cancer Pain & Associated Symptoms (n=1635)

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

• neuropsychiatric (20%)• vomiting (20%)• urinary (14%)• indigestion (11%)• weakness (10%)• diarrhea (6%)• itching (6%)• skin (3%)

Grond et al, 1994

Potential Interventions

drug infusions (pain, sedation)urinary catheteroxygenskin care nasogastric tubeparacentesis / thoracentesis

Hot Button Issues

• nutrition• hydration• airway secretions• pain pumps (patient controlled… but family

imposed)• delirium

Organ Donation

• in cancer patients, restricted to corneal tissueif 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?

Seow H et al. JCO 2011;29(9):1151-1158

Time Before Death (in weeks)

Cancer patients seen at Cancer outpatient clinics across Ontario

• 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)

Mea

n PP

S Sc

ore

Functional Status PPS

27

ECOGPalliative Performance Scale (PPS)

% Ambulation Activity & Evidence of Disease Self-Care Intake Level of

Consciousness

0 100 Full Normal activity No evidence of disease Full Normal Full

190 Full Normal activity

Evidence of disease Full Normal Full

80 Full Normal activity with effort Evidence of disease Full Normal/

Reduced Full

270 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

350 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

4

30 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

Tran

sitio

nal

Stab

leEn

d-of

-life

Ma C, et al. Eur J Cancer 2010

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)