Palliative care:
Is not owned by one specialty in healthcare.
Should be naturally infused into the entire care journey.
Should be delivered seamlessly without labels.
Is an approach to care that balances hope & reality.
# Medtwitter
#Palliativecare
#Healthpolicy
#Meded
All doctors must learn obstetrics in medical training. Yet, few will end up delivering babies once graduated. There is NO mandatory training in
#PalliativeCare
. Yet, ALL doctors will care for patients facing progressive life-limiting illness! Make sense?
#Medtwitter
#Meded
Why do we talk to unconscious patients?
1. Respect
2. Humanize care
3. Comfort
4. Hearing may be preserved
5. Assuage fears
6. Keep them informed of what’s happening
7. Warn them when touched for the purposes of care
Patients are always people.
#Medtwitter
#Meded
Hospital bed arriving at home;
1. I'm getting worse.
2. They are giving up on me
3. It's too small for my partner/family
4. It's cursed because others have died in this same bed
5. It's over
Be sensitive to the meaning for patient's behind this major transition point.
#Medtwitter
Home visit. Woman dying of
#Cancer
. Family meeting in the living room. Little shoes poking out from the adjacent room. Her 5 year old granddaughter, listening. Mother 'caught her'. I invited her into the room. She clearly wanted to be part of the family meeting.
#Medtwitter
Dying is often missed until the final days of life.
In reality, dying from a progressive life-limiting illness can start months before death.
The subtle early signs are often attributed to everything else.
Precious time is stolen in the frenzy to fix normal dying.
#MedTwitter
We reduce patients to:
1. The illness- ‘the cancer patient’
2. The room number- ‘the guy in room 4’
3. The bed- ‘bed 6’
4. The stage - ‘palliative patient’
While we argue that this reduces confusion, it also dehumanizes the care.
Keep the person whole.
#Medtwitter
#Meded
"I'm not scared of being dead," she said. "But I'm scared of what happens between now and then."
THAT is called dying. THAT is what is missing from healthcare training. THAT is what most people want to know. THAT vortex IS what amplifies physical symptoms.
#MedTwitter
#MedEd
Please don't reduce
#Palliativecare
to a specialty or hospice. It is an approach to care woven into the journey from diagnosis of a progressive illness. Delivered by ALL health care providers in all settings.
Mic drop! (my kids would cringe that I just said mic drop)
#MedTwitter
Sure, we could;
1.Train more
#Palliativecare
doctors
2. Figure out how to get more referrals
3. See
#Patients
earlier in their illness
We will NEVER make a dent until every graduating healthcare provider has the basic skills to provide a palliative approach.
#Medtwitter
The hardest messages to sell about
#Palliativecare
;
1. It is an approach to care.
2. Deserving of anyone facing life-limiting illness or aging.
3. Starts at diagnosis.
4. Delivered by all
#Doctors
&
#Nurses
.
5. NOT a label, diagnosis or point in time.
#Medtwitter
#MedEd
#hpm
Why doctors should be trained in home-based care;
1. Appreciate 'family' as part of care team
2. Learn how to co-create care plans
3. Feel power differential disappear
4. Understand home when discharge planning
5. Learn to collaborate w/ community providers
#Medtwitter
#MedEd
We can teach medical students about palliative care being a skill for ALL doctors, but unless they see it role-modelled by faculty across ALL clinical rotations, they will continue to think that
#Palliativecare
specialists are the only ones who need to do ‘it’.
#MedTwitter
#MedEd
When a patient or family decide to stop life-sustaining treatment bc the underlying illness is advancing & quality of life is poor:
This is not suicide
This is not murder
This is not medically assisted death
This IS allowing natural dying.
#MedTwitter
#Meded
#Palliativecare
Doctors & nurses are experts in the biology of an illness but the patient & family are the experts in their experience of the illness. Invite space to learn how it feels. Your recommendations will be more successful.
#Medtwitter
#MedEd
#Caregivers
#palliativecare
#Medstudent
I asked him many questions.
A very elderly man.
“I miss my wife,” he says at least 15 times throughout my visit.
I stop asking questions.
“I’d like to hear more about your wife,” I say.
Know when to listen.
#Medtwitter
#Meded
#PalliativeCare
Power gap is lessened on a home visit.
1. I knock & wait to be invited in as ‘Dr. Sammy’
2. I take off my shoes
3. I hang my coat on the bannister (no lab coat)
4. I sit
5. I ask permission to speak openly (plain language)
6. I co-create care plans
I am a guest.
#MedTwitter
What is the main thing I do as a
#Palliativecare
doctor?
I am the antidote to an uncomfortable healthcare system that is allergic to dying.
I spend every day of my career untangling this mess.
Enough!
Time to get real.
Our patients & their families deserve it.
#MedTwitter
Did you know
#medical
student get almost NO training in home-based care? Yet, 90% of people prefer to get treatment at home at end of life. 🖐🏽✋🏻🤚🏾Hand up if you think we should consider more training in home-based care, especially with an
#aging
population?
#MedTwitter
#MedEd
To die at home you need:
1. Info about what to expect
2. A will to die at home
3. ‘Family’ on board to help coordinate & provide intimate care
4. A formal care team who has access to
#PalliativeCare
expertise
5. A list of who to call
6. A back up plan
#MedTwitter
Why do
#Palliativecare
consults take long?
1. Meet the person late in the journey.
2. Patient considered a whole person, not a diagnosis.
3. We sit, listen, accompany & offer presence.
Would be less time if whole person care was shared & started at diagnosis.
#Medtwitter
Christmas arrived at my patient's home. Tree up, stockings hung, Christmas mugs engraved 'Santa is on his way.' Everything red & green. She was even wearing evergreen earrings. For a moment I thought it was December. They moved it forward. She won't make it to 25/12.
#MedTwitter
The signals that a person has entered the last year of life are often missed.
The gift of time slips away behind the noise of healthcare.
An expected death turns into a sudden death.
The final chapter written by the healthcare system instead of the person.
#MedTwitter
What does
#Palliativecare
look like early in an illness trajectory?
An invitation to the patient and family to balance hope and the reality of the illness.
A commitment to truth.
A spirit of open communication.
Every effort to lean in when the going gets tough.
#Medtwitter
Dying can seem like a rollercoaster. Families can start to:
1. Feel exhausted
2. Doubt the prognosis
3. Feel guilt, hoping for the end
4. Try to feed & hydrate their loved one
5. Perceive more pain
Families require as much care as the patient during the vigil.
#MedTwitter
“Have you had any falls,” I ask.
“Only one,” he says with a boyish grin.
“I fell hard for her,” he says looking over at his wife.
They are hoping he’ll make it to their 50th wedding anniversary….
He is declining in so many ways.
But some things remain intact.
#MedTwitter
Most definitions of
#Palliativecare
focus on quality of life, holistic care & person/family centredness.
Sounds to me like this should be part of all care.
Time to integrate palliative care into the training of ALL healthcare providers!
#MedTwitter
#Meded
#MedStudentTwitter
When a person dies from an expected death at home;
It is not a crime scene
No need to call 911
No duty to report to police
A precious time for family to sit, exhale & be together
Nothing gory happens
Hours can pass
Every family, culture, death is unique.
#Medtwitter
Discharged from hospital.
Did they know his partner is completely burnt out?
Did they know the family doc is away?
Did they know home care will take a few days to get organized?
Who did they expect to give his meds around the clock?
Guess what? He’ll be back.
#MedTwitter
Discharge home from hospital. Patient & family not told;
1. the illness was progressive
2. there would be another similar exacerbation
3. about an 'action plan' for home management
4. the family would have to provide most of the care
5. how hard it was going to be
#MedTwitter
There aren’t enough
#Palliativecare
providers to meet the needs of patients & families.
While we try to convince practicing healthcare providers to integrate a palliative approach into their practice…
It must become part of their formal training!
It’s missing!
#Medtwitter
Things I can’t explain about dying: sometimes…
1. People see loved ones who have already passed.
2. People who are declining suddenly have a burst of energy before the final descent.
3. People sometimes die when the family momentarily leave the room.
A mystery.
#MedTwitter
When are we going to finally make
#palliativecare
a mandatory part of
#healthcare
curriculum?
Twice as much time is spent unteaching & teaching already graduated healthcare providers!!!
All the while….
#patients
are stepping onto the healthcare conveyor belt….
#MedTwitter
We will never improve end-of-life until we improve the entire illness journey.
Right from the time of a diagnosis and through every chapter of an illness, people have the right to receive human centred care!
This is not solely the job of
#PalliativeCare
.
#MedTwitter
#Meded
What I don't see virtually;
1. Husband waiting outside to catch me before I go into the home
2. Daughter nodding 'yes' when mother saying 'no'
3. Son silent, head bowed, tears
4. Suffering thick in the air
5. Daughter follows me to the curb
Can't replace home visits.
#Medtwitter
"You're palliative"
1. I'm what?
2. So you mean there's no more options?
3. Will I still get attention?
4. Will you still be my team?
5. Are you giving up on me?
6. What was I yesterday?
7. I guess there's no more hope...
Palliative is NOT a point in time.
#Medtwitter
#MedEd
He wore a clean starched white shirt 7 days a week regardless of the occasion.
His signature.
In his final days, he was too weak to dress. His daughter cut his shirts straight up the back.
He died in a clean starched white shirt.
#MedTwitter
#Caregiver
#MondayThought
#Homecare
It’s time!
#Palliative
care is the foundation of healthcare.
It shouldn’t be reduced to a label, a point in time, a diagnosis, end of life, a specialty.
It is an approach, a philosophy and a unique blend of skills.
It ensures that a
#Patient
is seen as unique.
#Medtwitter
She wants it their way.
Been coordinating her father’s care for months as he declines at home.
She is assertive.
She has high expectations.
She wants the best for her Dad.
She is protective of him.
What does she get in return?
The ‘difficult caregiver’ label.
#MedTwitter
10 palliative care consults this week
10 patients wanting more info about what to expect
10 had asked their provider previously
10 had difficulty getting answers
10 minutes
That’s how much time it takes to describe what to expect
10 people feeling more grounded
#Medtwitter
Palliative care needs a long term plan!
We’ve been a specialty for over 60 years.
Amazing work!
Now, we must go hard…training all healthcare providers to be comfortable & competent to provide palliative care.
Citizens deserve palliative care everywhere!
#Medtwitter
#Meded
My epiphany: Caregivers are not part of our team-we are part of their team.
When a person is diagnosed with an illness, the family becomes the eyes & ears. It isn’t enough to invite
#caregivers
along for the ride-they need to be in the front seat.
#ThursdayThoughts
#MorningWisdom
Dying from a progressive life-limiting illness;
1. Increased fatigue
2. Increased weakness
3. Loss of appetite
4. Needing help with personal care
5. Fading month to month, week to week, then day to day
6. Eventually bed-ridden
These are the most common signs, not pain
#Medtwitter
Husband of patient told me that in all the sadness of her progressive illness, there have been moments of deep tenderness. "When we are alone and I'm trying to wash & dress her it can get tricky but we often start laughing," he shares. "We've never felt so close."
#Medtwitter
Patient told "no chemo unless you go home & gain weight". Stage 4 cancer, zero appetite, more tired, weaker, harder to get to clinic. No reversible cause identified. Why not invite the truth....no more chemo because the person is dying. Honesty is best treatment.
#Medtwitter
Our bodies are programmed to eventually die.
The trigger will be a progressive illness or aging.
The precursor of death is called dying.
A chapter not a page.
A dimmer not a switch.
Normal not wrong.
Identifiable not random.
Harnessed instead of denied.
#Medtwitter
You must fight!
You can beat this!
Stay strong!
Be positive!
You can do it!
You must try!
That’s a ton of pressure for someone facing a progressive life-limiting illness.
Those phrases are conversation enders, not starters.
Resist the temptation & listen.
#Medtwitter
#Meded
Been trying to offer
#PalliativeCare
consultation in local nursing homes. Made it known that I am available. Unfortunately, little uptake. I'll stick with it & keep trying. Frustrating since I know there is a huge need. Average life expectancy 18months. Barriers?
#Medtwitter
Early
#Palliativecare
is NOT just about referring to a palliative care specialty team earlier.
This care is a philosophy & an approach to care delivered seamlessly & integrated by every healthcare provider that has a touch point with people facing serious illness!!!
#MedTwitter
Working on a presentation. Asked to speak about improving end of life care for patients with
#Dementia
.
My main message…..
To improve the end, we must start at the beginning.
True for all progressive life-limiting illnesses!🌺
#Elderly
#Medtwitter
#Meded
#Caregiver
By far, the most important question that I ask patients & families:
"How much do you understand about the past, present & future of your illness?"
Should be posed at the time of diagnosis & at intervals along the way. Big picture!
#MedTwitter
#Caregiver
#MedEd
#Medstudents
People have the right to know how their body will change over their lifetime.
Puberty
Pregnancy
Menopause
Aging
DYING
Yes….dying is a distinct stage.
Yes….dying is not just a moment in time.
Yes….you deserve a roadmap for this stage just like the others.
#MedTwitter
Dying can feel lonely….even when lots of people are around.
Surrounded by positivity, a person can feel silenced & not permitted to share what’s really on their mind.
Many dying people are waiting for the invitation to get real.
Listen for loneliness.
#Medtwitter
#Meded
There are a fair number of
#Doctors
&
#Nurses
that end up working in
#Palliativecare
after a long career in other areas.
Why?
It feels like coming home…
A reminder of the reason they originally chose their profession.
To care & heal even beyond cure.
#Medtwitter
#Meded
Older persons don't often die suddenly. They typically exhibit a decline in the last year of life; a trend of weakness, less energy/appetite/mobility - all harbingers of dying. Patients & families have a right to this information.
#InternationalDayofOlderPersons
#MedTwitter
“Don’t tell him,” they warn at the door.
I ask him, “Are you the kind of person who would like info about your situation….for better or worse?”
“Of course,” he says.
I share.
He cries.
The nurse, mad at me outside, “Why did you do that?”
It is his right.
#MedTwitter
“Dr. Winemaker, the patient is really agitated,” she reports.
Check bowels
Check bladder
Check for pressure ulcers
Look for signs of infection
Assess for pain
Review meds
Review goals of care
Don’t assume pain
Don’t assume it is normal part of dying
#MedTwitter
#Nursing
#Meded
When I was the medical director of a local hospice I was struck by the one thing that new patients were most looking forward to, that first bath. Many had gone months with just sponge bathing. Next time you take a bath, consider what a luxury it really is to soak.
#MedTwitter
P- people deserve the truth
A- acknowledge fears
L- listen
L- learn to be present
I- invite reality into the room
A- acknowledge the family
T- tell them how things will unfold
E- explain what to expect
PALLIATE DON’T PLACATE!
#MedTwitter
#Palliativecare
#Palliative
#
#Meded
Hospices typically have ~10 ppl. Nursing homes have hundreds. One setting gets 'Rolls Royce'
#Palliativecare
& the other 'Ford' at best. This is a huge problem. Why the discrepancy when both settings are places where 100% of occupants die? Thoughts?
#Medtwitter
#LTC
#Aging
#hpm
“I wish I had known.”
“Why didn’t anyone tell me?”
“I would have made different choices.”
This is what they say at the end.
The entire illness, no one told them what to expect.
Clinicians were too busy in the trees of the illness instead of the helpful forest.
#Medtwitter
Three family members on the couch bracing themselves. Leaning together, holding hands as I wove a thread of meaning through his many illnesses. No longer reduced to his parts. Wife said, "This is the first time I've felt peace in over a year." That's all it took.
#MedTwitter
If I get an incurable cancer I hope my oncologist;
1. Gives me the big picture
2. Tells me where I’m at each visit, including my prognosis
3. Helps me understand my options including if I chose to stop
4. Explains how their role changes over time
# MedTwitter
#Oncology
#Cancer
Elderly people don’t typically ‘up & die’ out of nowhere.
They descend….over a period of years, then months, then weeks….
THIS is normal dying.
It requires people in attendance.
Plan for this inescapable chapter of life.
#Eldercare
#Dying
#Medtwitter
#Seniorcare
#Eol
“We didn’t tell him about the
#Cancer
. He won’t understand because of his
#Dementia
,” his family say.
He is smiling at me.
“Do you have any questions about your situation,” I ask him.
“How much longer till I see my lovely wife up there,” he points.
He knows.
#Medtwitter
To
#Caregivers
who carry around feelings of guilt;
1. You made decisions with the best info you had at the time
2. Your intentions were good
3. You were more than good enough given the situation
4. You had no training & little respite while juggling many balls.
#Medtwitter
Spoke to a
#Geriatrician
yesterday about her practice. That’s a medical specialty that get’s it!
1. Whole person care
2. Seek
#Caregiver
input
3. Assess caregiver’s need
4. Meet patient where they’re at
5. Consider home environment
Sounds like
#Palliativecare
!
#Medtwitter
#PalliativeCare
is incredibly human.
But when human centred care is reserved till the end or only delivered by a small group of specially trained healthcare providers…..it’s often too little, too late.
Palliative care can’t reverse a journey of depersonalized care.
#Medtwitter
Community is the largest care setting.
Where people spend most of the illness.
Cared for between visits to ER, Hospital & clinics.
By a mix of trained & untrained people.
It deserves real estate in healthcare curriculum.
Why do we settle for ‘half training’?
#Medtwitter
Illness awareness is not just knowledge of the diagnosis.
Includes:
1. The storyline of the illness.
2. Where the person is at in the illness.
3. What to expect.
4. Anticipating big decision points.
5. How to plan ahead.
6. Inviting the ‘family’ in the know.
#MedTwitter
Pt w/ Autism, nonverbal. Advanced illness. Uncomfortable w/
#Healthcare
& examination. In his home, allowed me to examine his belly. Sat beside him a moment longer. He moved closer, peeled up my sleeve, gently put his cheek to my bare arm. His gesture spoke volumes.
#Medtwitter
Palliative care is curated care.
It is moulded, tailored & meets the patient where they are at.
It’s care that feels good for BOTH the clinician & patient/family.
Should be woven into all care, all settings, by all clinicians…along the entire illness journey.
#MedTwitter
Land mines for patients & families facing serious illness:
1. Toxic positivity
2. Doctor knows best
3. Take one day at a time attitude
4. Standard/usual care is best for the person
5. Passive patients are easier
6. Quiet families are easier
7. No news is good news
#Medtwitter
The last goodbye when you know you won’t see the person again before they die can be awkward.
A gentle touch, a small nod, or a warm smile can be enough.
Expect to feel mixed emotions.
That’s okay.
That’s life.
That’s dying.
#Medtwitter
#PalliativeCare
#Hospice
#Meded
Dying is a distinct stage of human life. Yet, most of us will arrive in shock.
We prepare for all other life events…between being born & death….except for dying.
Dying is the precursor of death. It is a chapter, not a page.
#Medtwitter
#Dying
#Death
#Healthcare
#Life
I can't believe how hard patients,
#caregivers
& 'family' need to work to get straight, frank, honest information from healthcare providers about their diagnosis & illness journey. It's actually mind blowing. Their illness, their body, their life...not ours.
#Medtwitter
#MedEd
Phrases to open the convo about the future with ppl facing serious illness:
1. Does your mind ever wander into the future?
2. What do you think about when it’s quiet?
3. Are you a planner?
4. Let’s plan for today. Would you also like to discuss the road ahead?
#MedTwitter
So much time trying to convince already graduated healthcare providers that they need to know how to provide
#Palliativecare
.
But, there is no mandatory curriculum in their training!
Surprised there’s still confusion?
Our efforts are futile unless this changes.
#MedTwitter
People who are dying can feel loss of control. We can give this back by:
1. Listening
2. Reminding them of their choices
3. Honouring their decisions
4. Providing info about what to expect
5. Helping them plan for what’s ahead
People crave to feel more grounded!
#Medtwitter
The ability to remain at home until the very end of a progressive illness relies heavily on having a person in your life who will step up as ‘manager’. When I meet a new patient, I’m scanning for that person. Who is your person?
#MedTwitter
#MedEd
In the last weeks of life, people who are dying show us how to;
1. Adapt
2. Be humble
3. Receive intimate care
4. Rely on others
5. Face mortality
6. Forgive
7. Show strength
Sometimes they even show us the possibility of transcendence & peace.
#MedTwitter
#FridayFeeling
Medical residents…. when doing a palliative care rotation, share;
“THIS reminds me why I went into medicine in the first place!”
Along their training it gets lost….
#Palliativecare
(humanized medicine) is like coming home.
THIS should never be lost.
#MedTwitter
#Meded
Did you know that medical curriculum does not include any mandatory standard training in home or community based care?
Yet, we scramble to understand why ppl are flooding the ERs, why docs fail to make effective discharge plans & ppl boomerang back to hospital. 🤦🏼♀️
#MedTwitter
How to infuse
#Palliativecare
early in the illness:
1. Invite patients & families to learn the storyline of their illness.
2. Honest communication, for better or worse.
3. Anticipate decision points & transitions.
4. Constant assessment of informational needs.
#Medtwitter
We shouldn’t have to retrofit
#PalliativeCare
into the illness journey.
The ethos of this care is holistic, balances quality of life and acknowledges mortality.
This is not a special type of care. It is the foundation of ALL care.
From beginning to end!!
#MedTwitter
#Meded
Please share with my medical student how it feels to speak so openly about dying. He replied, "I see life as a great book. It's sad when it's over and you dread the last page. But, you have to read it & sometimes it's the key to the entire story."
#Medtwitter
#PatientExperience
The oncologist made an appointment for her to return in 4 weeks.
Clearly, she wouldn’t make it.
Honest communication about the reality of the situation is our duty & the patient &
#Caregiver
’s right.
Her last few weeks spent worried about getting to the clinic!
#MedTwitter
Death does not typically sneak up on people when facing a progressive life- limiting illness.
There is a distinct chapter called dying that comes before death.
It has an underlying pattern that CAN be recognized months before.
This, the ironic gift of time.
#MedTwitter
Medical students must learn about all areas of medicine.
Except
#Palliativecare
.
Yet ALL doctors will need to care for ppl with progressive life-limiting illness.
THIS is the reason our ERs are full, ppl can’t be discharged from hospital & ppl receive futile care.
#Medtwitter