ACP
Comprehensive approach to caring for the sickest and most complex patients and their caregivers
What is: Palliative Care
Sub specialty of medicine (1997) originating from the hospice movement (1980) now distinctively unique service used from time of diagnosis when risk and symptom burden are high.
Complex: Pain & Symptom management / Understanding of Illness/Advance Care Planning / Complex Decision Making/ Hospice Evaluation
Dx population more likely to receive life support interventions as compared to other groups
What are: patients with COPD
BODE Score: Body mass index, airflow Obstruction, Dyspnea, and Exercise index
gives information on prognosis for 1-year, 2-year, and 4-year survival.
FEV1 <35% (18% alive in 4 years) is same as
FEV1 35-50% with deteriorated performance status
Performance Status
What is: Prognostic guide with certain diagnoses as it relates to life expectancy.
FAST - dementia
ECOG - Cancer
ALSFRS - ALS
PPS - any serious illness
A health condition that carries a high risk of mortality and either negatively impacts a person’s daily function or quality of life OR excessively strains caregivers
What is: serious illness
Untapped areas of adjustment to illness and understanding of illness.
"No one told me I would ever have respiratory failure" - COPD Patient with FEV1 <35%
"I must be dying soon - I have had this diagnosis for 4 years" - ALS with FVC >80%
Adjuvant agents for neuropathic cancer pain
Gabapentin
Pregabalin
Nortriptyline
Methadone
This is the starting point of a serious illness conversation
What is: Exploring what the individual knows.
What is your understanding now of where you are with your illness?
Followed by "how much information about what is likely to be ahead with your illness would you like from me?
Share prognosis: "I want to share my understanding of where things are with your illness...."
I wish, I worry, I wonder
Median Survival after initiation of dialysis
What is: 4.5 years
Overall survival:
1 year mortality rate of 20-25% and a 5 year survival rate of 34%
> functional impairment = 3 fold risk for mortality
Significant symptom burden pain, fatigue, insomnia and depression
The single most predictive factor in determining prognosis in cancer patients
What is: Performance Status (ECOG)
Not necessarily the case with other diagnoses where functional impairment is not a predictor of life expectancy.
Essential component of discussion is to discern between functional prognosis and overall prognosis/life expectancy and the components of risk for later.
ILD
What is: Progressive disease with poor prognosis and limited response to conventional pharmacologic treatments.
Appropriate for concurrent PM&R program and Palliative Medicine consultation.
Exercise capacity, QoL and ACP.
3 diagnostic groups with suboptimal pain management
What are:
Cancer (45%)
Advanced COPD (50%)
Severe HF (85%)
NY state ranking for hospice enrollment out of 50 states
What is: 47?
Life expectancy 6 months or less if illness takes natural course.
DNR/DNI not required
Concurrent with treatment for age 21 or younger
Family based care - 15 hours at best of HHA
Neurotrauma, stroke, neurodegenerative disease, cardiopulmonary disease, cancer, and vascular amputation
What are: PM&R populations appropriate for concurrent palliative interventions amidst high symptom burden, functional impairment and often, limited life expectancy.
"Goals of care discussed" in a HFpEF with severe AS
What is: A non specific conversation regarding risk for mortality/morbidity or symptom burden in a person with serious illness.
Possibly a marker for hesitancy.
Transparency in documentation of conversations in serious illness allows for others to reinforce, develop and explore the conversation with patient / family.
Designation of 59 Board Certified Physiatrists
What is: Hospice & Palliative Medicine Board Certified (2021)
PM&R: 1947
HPM: 2008 (2014 requires fellowship training)
As of 2018 there were 9000 HPM Physicians.
Oral Morphine Equivalent of 2 Percocet
What is: 15 mg
2 Percocet equals:
Hydromorphone 4 mg PO
Hydromorphone 0.75 mg IVP
Morphine 5 mg IVP
Fentanyl 12 mcg/h transdermal (in 24H period)
Fentanyl 50 mcg IVP
These words are standardized in conversations about diagnosis, prognosis and recommendations for future care.
What are:
I Wish: align with the patients hopes
I Worry: allows for truth with sensitivity
I Wonder: offering subtle recommendation without jugdement
Hearing the patient's perspective on where they are and what is important to them leads to optimal ACP discussions.
This is used to identify patients who might benefit from palliative interventions
What is: the Surprise Question
“Would I be surprised if this patient died in the next 12 months?”
Simple screening for:
- potentially unmet palliative needs or
- to identify those in final year of life
Benefits of concurrent palliative/oncology care with lung cancer (2010)
What are: less depression, increased quality of life and a longer survival rate
Routine visits for symptom management and prognostic awareness were primary interventions with goals of care discussions gaining added importance later in the disease course.
New standard of care - concurrent Pall Med involvement from time of diagnosis with metastatic lung, colon and pancreatic cancer.
Oncologist are overly optimistic by a factor of 3 when prognosticating for their patients - earlier the better otherwise too late to make an impact
Palliative interventions start here
What is: with the primary team -- initiates palliative interventions and refers to specialty level providers when indicated.
Complex patients with a serious, life-threatening illness benefit from consultation with palliative care specialists, who are trained and experienced in complex symptom management and challenging communication interactions, including medical decision making and aligning goals of care
Definition of "Opioid Tolerant"
What is a daily dose of:
> 60 mg of oral morphine
> 30 mg oral oxycodone
> 8 mg oral hydromorphone 8 mg
25 mcg transdermal fentanyl
For at least 7 days
Opioid naïve patients should not be started on extended release opioids or Fentanyl Patch
Intensive coordinated end of life services
What is: Hospice Care
Palliative care on the other hand is patient centered assessment and relief of symptoms (physical, emotional or existential) through course of serious illness.
Pall Med Service is available for complex issues that have not responded to primary palliative interventions.
It is the umbrella, not the rain
What are: Palliative primary interventions and consultation.
Predicting the weather can be difficult; and having an umbrella will not cause the rain.
Living with chronic, critical or progressive illness can be unpredictable.
Avoiding Palliative consultation will certainly not prolong life, reduce untoward symptoms, reduce risks for LST - though will likely lead to distress.
"I/They/We want to keep fighting"
What is: a challenging situation that needs a new approach -- a reframing conversation.
"We are in a different place" - can't continue with the same plan or strategies and why.
"Here is what we can do now" - offering specific recommendations for what the new strategy could entail.
"Given this what do you think we should do?" - exploring how they want to live knowing what we know and piecing that together with them.
Encouraged in ALS but not Dementia
What is: Gastrostomy Tube
Indicated at an earlier time point between a weight loss of more than 10% and advanced dysphagia indicated by the ALSFRS-R swallowing sub score of 2 or less.
Progressive weight loss and malnutrition are directly correlated to deteriorating FVC.
FVC 30% = hospice eligibility
Viewed as a weak opioid and often used to avoid opioids
What is: Tramadol
It's metabolism is hugely variable, so giving a dose of Tramadol is like giving venlafaxine and morphine in an unknown ratio.
It also is associated with increased risks of hypoglycemia, seizures, serotonin syndrome and all the other usual stuff with opioids (including dependence, addiction, and death).