a moment of intersection...• “napkin notes” – garth callaghan • “the mercy papers” –...
TRANSCRIPT
Normalizing the Death and Dying Conversation
A Moment of Intersection!
Creativity, Death and Humor
Faces of Change!
Creative Influences!
We Must Unlearn What We Think We Know About Death!
Faces of Change!
Faces of Experience!
Faces Behind the Stories!
A Wake-Up Call !
Research!• Aggressive end-of-life treatments are associated with
decreased quality of life for patients and worse grief adjustment. (NEJM, “Early Palliative Care for Patients with … Cancer”)
• A person without advance care planning is physically moved from one setting to another an average of three times in the last few weeks of life. (Journal of the American Medical Association study, 2013)
• Cancer patients saw 10 or more physicians during the last six months of life/ experienced increased strain on patients and caregivers as well as increased healthcare costs. (Dartmouth)
• In the whirl of doctors’ appointments, transferring from one location to another and fragmented care, patients, caregivers and providers avoid difficult conversations about end-of-life.
Working in Healthcare!
Blame the Little Black Bag!
We’re All Human!
Where Do We Begin?!
US. We (those of us working in healthcare)
must lead by example.
Fact!
Only 30% of us working in healthcare have communicated our wishes and documented them in a form
of an advance directive.
Design Your End Of Life!How do we become engineers
of our own death? • If we’re not comfortable talking about our own
mortality, how can we begin to expect our patients and families to be comfortable?
• As healthcare providers, we need to implement and take the same advice/recommendations we give to our patients and families everyday.
If we are going to preach it, we must be willing to do it!
Awareness!
We speak a different language. Med-Speak
• Medical students learn more than 60,000 new words in medical school.
This is a different type of language that could be the root cause of confusion
between physicians and patients.
Awareness!
Shadow a palliative care team or a hospice team member
• We must learn to conduct frank and authentic conversations with our patients in a limited time and get really, really good at it.
We must identify key moments to engage.
Facing Reality !
Identify Key Moments!Identify key moments to build the
blueprints to end of life for patients • Recent hospitalization: “Things went well that time, but I realized
we never talked about what you wanted if something went wrong” • Listen: During hard conversations we tend to talk too much. Talk.
Pause. Listen. Answer Questions.
• Acknowledge Emotional Responses: “You look surprised. This is hard information to process. As your provider I want you to know the reality we are facing so you can make the best decisions for yourself.”
• Don’t wait: In an ideal situation, advance directives completed in the outpatient setting
• Set goals: Once goals are set, discuss if they are realistic.
It Sounds So Easy!In healthcare, we see countless patients
throughout our careers for many reasons – at birth, a broken bone, rehabilitation, home health,
surgery, chronic diseases and more. However, there is one thing about our patients we all must
understand… one day they will all face end of life. It could be around the corner or many years away, but we know some day all of our patients will die.
So, why is it so hard to have these conversations about end of life with our patients?!
Research!• Most adults say they prefer to die at home, yet only
about one-third have an advance directive expressing their end-of-life care wishes. (Pew, 2006: AARP, 2008)
• Most Americans (71%) believe it is more important to enhance quality of life for seriously ill patients – even if it means a shorter life – than to extend the life of seriously ill patients through medical interventions. (Regence, 2011)
• 34% of American adults are conversation avoiders. They won’t talk about their end-of-life wishes. (Marist Poll)
Empowering Patients!
How do we empower our patients to play a role within
their own healthcare decisions?
It can’t only come from WebMD, right?
Don’t Avoid Hard Conversations!
Be The Difference!Be the producer.
Allow the patient to be the director. • We are KEY in producing our patients’ stories
so they can direct us on what they want.
• You could be THE person has an impact on where and how our patients face end of life.
How do we accomplish this in a system that is about productivity, billing and EMRs?
When We Don’t Talk About It!
Impact on Healthcare!• In their last two years of life, patients with chronic illnesses
account for about a third of total Medicare spending. (Dartmouth Study)
• In 2012, Medicare paid $55 billion for doctor and hospital bills during the last two months of patients’ lives. (CBS News)
• A Dartmouth Atlas study found 17 percent of Medicare’s $550 billion annual budget is spent on patients’ last six months of life.
In healthcare we often know, that many !end-of-life treatments patients and families !
believe will extend life usually do not.!
Impact on Patient Satisfaction!
• Aggressive end-of-life treatments have been associated with decreased quality of life for patients. (NEJM, “Early Palliative Care for Patients with … Cancer)
• A person without advance care planning is physically moved from one stetting to another an average of three times in the last few weeks of life. (Journal of the American Medical Association study, 2013)
Good News!Providers are often overly optimistic
with patients they’ve known and treated for a long time.
• Reality: In some cases providers have overestimated survival of terminally-ill patients by 500%. (BMJ, Volume 320, February 2000.)
When physicians are uncomfortable giving bad news, they may avoid discussing distressing information, such as a
poor prognosis, or convey unwarranted optimism.(www.health.gov/communication/literacy/quickguide/factsbasic.htm)
Key Forms !• Living Will: Outlines future medical treatments when a person a
has an incurable or irreversible condition that will result in death within a short period of time, or when a person becomes unconscious and, to a high degree of medical certainty, will never regain consciousness.
• Healthcare Power of Attorney: Document where a person appoints a healthcare agent to make future medical decisions if that person is unable to make or communicate on his/her own.
• Other Forms: Organ, eye, and tissue donation registration; donation of body after death; HIPPA release or authorization form; healthcare-related insurance coverage; funeral, memorial service, burial/cremation planning; Five Wishes
Physician Order Forms!• DNR is a legal medical order that addresses: do not
resuscitate, no code and intubation only. It directs withholding CPR or advance cardiac life support to ensure a patient’s wishes are followed if patient’s heart stops or if your patient stops breathing.
• Portable Medical Orders such as the MOST/MOLST/ POLST/POST forms convey a patient’s treatment preferences at end of life. Forms are more comprehensive than a portable DNR and include several decisions including resuscitation, as well as wishes about intubation, antibiotic use and feeding tubes.
New Mexico uses a MOST form
Dated vs. Innovative!
I walked around my hospice office recently and asked if anyone could show me their advance care
planning documents…
100% of those asked could not show me or provide proof they had
completed advance care planning
Questions to Ponder!How do we balance our professional medical
judgment with our patient's treatment preferences for end-of-life care if they differ? • Are we practicing shared decision-making with patients? • What do you think educational intervention (curriculum)
should include? • How are our attitudes influencing our patients’ treatment
decisions for their acute or chronic illnesses? If we are not being taught to have difficult conversations with our patient’s upstream,
how can we find tools to help us?
Other Resources!Center to Advance Palliative Care – online courses
https://www.capc.org/
Vital Talk http://vitaltalk.org/
Ariadne Labs
(Atul Gawande) Serious illness conversation guide https://www.ariadnelabs.org/
Advance Care Decisions
(Dr. Angelo Volandes) https://www.acpdecisions.org/
Read or Listen!Never stop being a student of LIFE • “Napkin Notes” – Garth Callaghan • “The Mercy Papers” – Robin Romm • “Living On” – Karry Egan • “Gone From My Sight” – Barbara Karnes • “When Breath Becomes Air” - Paul Kalanithi • “Being Mortal” – Atul Gawande • “Extreme Measures” – Jessica Zitter
Design Your End-of-Life!Make our last chapter an experience • Details matter most. Aren’t end-of-life experiences
more than conversations and paperwork?
• Death and dying are not black or white. This is colorful because it represents a story lived.
How do we incorporate our life within our death? • Favorite things
• Music • Planning our funeral
• Talking about our nectar list and/or bucket list
To Be Remembered!
Podcast:!“The Designer”!Coming soon!!
Kimberly C. Paul!Email
Facebook https://www.facebook.com/kimberlycpaulusa/
https://twitter.com/kimberlypaulnc
LinkedIn https://www.linkedin.com/in/paulkimberly
Phone
910.612.9548