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Optimizing care at end of life:
“We will do everything – the question is what kind of everything”




             Suzana Makowski, MD MMM FACP FAAHPM
Associate Director of Palliative Care in the Cancer Center of Excellence
                    Assistant Professor of Medicine
        UMass Memorial Medical Center, UMass Medical School
“few of us ever
adequately learn
how to care for
patients at the end
of life.”
-Pauline Chen, MD
Liver Transplant Surgeon
Overview

Context
Communication skills: nature or nurture?
Collaboration: opportunity and need
“Sure, we try to put
out fires. But, if we
can't put out the fire, a
good physician takes
the patient's hand and
walks with him
through the flames.”
- Atul Gawande, MD
Letting go. The New Yorker
July 26, 2010
Palliative care
 is an approach that
 improves the quality of
 life of patients and their
 families facing the
 problem associated with
 life-threatening illness,
 through the prevention
 and relief of suffering
 by means of early
 identification and
 impeccable assessment
                              WHO
 and treatment of pain
 and other problems,
ACS Board of Regents 2005:
Palliative care aims to relieve physical pain
and psychological social, and spiritual suffering
while supporting the patient’s treatment goals
and respecting the patient’s racial, ethnic,
religious, and cultural values. [...]

Although palliative care includes hospice
care and care near the time of death,
it also embraces the management of
pain and suffering in medical and
surgical conditions throughout life.
“It’s not about killing
 Granny; it’s about
 keeping Granny alive
 as long as possible —
 with the best quality
 of life.”

-Diane Meier, MD
MacArthur Fellow
90,000,000
Americans live with life-limiting illness
The number is expected to


double
in the coming years
Shifting the paradigm: not just end-of-life care
Temel - NEJM 2010, ASCO 2010
Temel - NEJM 2010, ASCO 2010
Temel - NEJM 2010, ASCO 2010
Temel - NEJM 2010, ASCO 2010
It’s not about giving up:
              Palliative Care can
                               Improve QOL
                               Decrease costs
                               Improve prognosis

Temel - NEJM 2010, ASCO 2010
How?
                        Symptom management
                        Psychosocial support
                        Patient-centered EOLcare
                        Communication

Temel - NEJM 2010, ASCO 2010
Communication   nature or nurture?
Communication
as a procedure
Communication




What I recommend:
  ask, ask, ask - tell - and ask a whole bunch more
Communication
What we do:
   tell - ask - and tell, tell, tell




What I recommend:
  ask, ask, ask - tell - and ask a whole bunch more
Communication
What we do:
   tell - ask - and tell, tell, tell
What evidence recommends:
  ask - tell - ask

What I recommend:
  ask, ask, ask - tell - and ask a whole bunch more
Communication
          Ask - Tell - Ask

Class:                    Spikes:
 • Context                 • Setting
 • Listen                  • Perception
 • Acknowledge emotions    • Invitation
 • Strategy management     • Knowledge
 • Summary                 • Emotion
                           • Strategy & summary
maximalist
                      minimalist


                                   ?                          OR

Groopman and Hartzband. Your Medical Mind. 2001. Penguin Press http://www.jeromegroopman.com/how-doctors-think.html
fixing problems
reaching goals
But doctor, he’s a fighter.




fixing problems
reaching goals
But doctor, he’s a fighter.
  I don’t want to die.




fixing problems
reaching goals
But doctor, he’s a fighter.
        I don’t want to die.
I want to go to Aruba next month.




    fixing problems
    reaching goals
But doctor, he’s a fighter.
        I don’t want to die.
I want to go to Aruba next month.
    I want to be in my garden.



    fixing problems
    reaching goals
Communication: full code or DNR?
JAMA. 2012;307(9):917-918. doi:10.1001/jama.2012.236 http://jama.ama-assn.org/content/307/9/917.extract
Massachusetts
MOLST




http://www.molst-ma.org/
Addressing the elephant   Speaking of dying
Communication
                40 yo mother from PR
                w/ appendiceal carcinoma:
                “In theory, we could operate, but should we?”
Palliative Care & Surgery
Palliative Surgical Care

• Communication
• Palliative surgery
• Alleviating suffering
Palliative Surgery
  "I hope we have taken
  another good step
  [gastrectomy] towards
  securing unfortunate people
  hitherto regarded as incurable
  or, if there should be
  recurrences of cancer, at least
  alleviating their suffering for a
  time."

- Theodor Billroth, MD, 1881
Young woman with
history of locally
advanced pancreatic
cancer, presenting
with abdominal pain,
nausea/vomiting.


Reviewing a palliative
approach to gastric outlet
obstruction.
Alleviation of suffering
There is more we can do
Caring for patient at end-of-life
      A surgeon’s role?
"I thought,
'I'm a doctor; I must
know everything in the
world about death and
dying.'
But, of course, I knew
absolutely nothing."
- Balfour Mount, MD
Surgical Oncologist & Founder of Palliative
Care Movement in N.America speaking on
giving his first talk about Death & Dying
from not-knowing
   to knowing
“So I think healing has to
do with slowing down,
coming into the present,
listening, accepting,
forgiving, entering into
community with, and
healing is prevented by the
opposites of those things.”

- Balfour Mount, MD
Surgical Oncologist & Founder of Palliative
Care Movement in N.America A
Wayfarer’s Journey: Listening to Mahler.
http://www.shoppbs.org/product/index.jsp?
CMO ≠continuous   morphine only
EOL Symptom management
• Continue treatments that alleviate
  symptoms today. Stop those that alleviate
  potential symptoms in a decade.
• Pain: if it’s there, treat it.
• Eye, mouth, skin care.
• Glycopyrrolate for secretions.
• Educate family.
• Engage chaplaincy and social work.
• Complex decision-making
                 • Unresolved pain
                 • Complex symptoms
                 • Psychosocial, cultural, spiritual needs
                 • Frequent ED visits
                 • Frequent hospitalizations
                 • Long hospital stay (LOS) - in or out
                 of ICU - without improvement




When to consult palliative care?
Palliative Pyramid
Fig. 1. The palliative triangle. Interactions between the patient, the family, and the surgeon
guide individual decisions regarding palliative care. The hope for potentially achievable
goals is advanced as each participant of the palliative triangle fulfills specific obligations.
Summary

• Surgeons historically have played an
  important role in palliative care.
• Communication is both a procedure and an
  art.
• Surgery and Palliative Care: A potential
  partnership in alleviation of suffering.
“Self-knowledge guides us in knowing when
  to give up on the hope of combating
  disease and when to soldier on; it prevents
  us from making decisions in which the real
  aim is to shore up our own personal
  defenses against insecurity; it shows us the
  sources of our own fears of death and
  lessens their acuteness; it outs our fears of
  passivity and impotence into perspective so
  that each failure of therapy is not the
  expense of reason. Most importantly, it
  enables us to fulfill our pastoral role as
  surgeons.
This, and not the technology, is what being a
doctor is all about."

-Nuland S. A surgeon's reflections on the care of the dying. Surg Onc

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Surgical Grand Rounds: Palliative Care

  • 1. Optimizing care at end of life: “We will do everything – the question is what kind of everything” Suzana Makowski, MD MMM FACP FAAHPM Associate Director of Palliative Care in the Cancer Center of Excellence Assistant Professor of Medicine UMass Memorial Medical Center, UMass Medical School
  • 2. “few of us ever adequately learn how to care for patients at the end of life.” -Pauline Chen, MD Liver Transplant Surgeon
  • 3. Overview Context Communication skills: nature or nurture? Collaboration: opportunity and need
  • 4. “Sure, we try to put out fires. But, if we can't put out the fire, a good physician takes the patient's hand and walks with him through the flames.” - Atul Gawande, MD Letting go. The New Yorker July 26, 2010
  • 5. Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment WHO and treatment of pain and other problems,
  • 6. ACS Board of Regents 2005: Palliative care aims to relieve physical pain and psychological social, and spiritual suffering while supporting the patient’s treatment goals and respecting the patient’s racial, ethnic, religious, and cultural values. [...] Although palliative care includes hospice care and care near the time of death, it also embraces the management of pain and suffering in medical and surgical conditions throughout life.
  • 7. “It’s not about killing Granny; it’s about keeping Granny alive as long as possible — with the best quality of life.” -Diane Meier, MD MacArthur Fellow
  • 8. 90,000,000 Americans live with life-limiting illness
  • 9. The number is expected to double in the coming years
  • 10. Shifting the paradigm: not just end-of-life care
  • 11. Temel - NEJM 2010, ASCO 2010
  • 12. Temel - NEJM 2010, ASCO 2010
  • 13. Temel - NEJM 2010, ASCO 2010
  • 14. Temel - NEJM 2010, ASCO 2010
  • 15. It’s not about giving up: Palliative Care can Improve QOL Decrease costs Improve prognosis Temel - NEJM 2010, ASCO 2010
  • 16. How? Symptom management Psychosocial support Patient-centered EOLcare Communication Temel - NEJM 2010, ASCO 2010
  • 17. Communication nature or nurture?
  • 19. Communication What I recommend: ask, ask, ask - tell - and ask a whole bunch more
  • 20. Communication What we do: tell - ask - and tell, tell, tell What I recommend: ask, ask, ask - tell - and ask a whole bunch more
  • 21. Communication What we do: tell - ask - and tell, tell, tell What evidence recommends: ask - tell - ask What I recommend: ask, ask, ask - tell - and ask a whole bunch more
  • 22. Communication Ask - Tell - Ask Class: Spikes: • Context • Setting • Listen • Perception • Acknowledge emotions • Invitation • Strategy management • Knowledge • Summary • Emotion • Strategy & summary
  • 23. maximalist minimalist ? OR Groopman and Hartzband. Your Medical Mind. 2001. Penguin Press http://www.jeromegroopman.com/how-doctors-think.html
  • 25. But doctor, he’s a fighter. fixing problems reaching goals
  • 26. But doctor, he’s a fighter. I don’t want to die. fixing problems reaching goals
  • 27. But doctor, he’s a fighter. I don’t want to die. I want to go to Aruba next month. fixing problems reaching goals
  • 28. But doctor, he’s a fighter. I don’t want to die. I want to go to Aruba next month. I want to be in my garden. fixing problems reaching goals
  • 29. Communication: full code or DNR? JAMA. 2012;307(9):917-918. doi:10.1001/jama.2012.236 http://jama.ama-assn.org/content/307/9/917.extract
  • 31. Addressing the elephant Speaking of dying
  • 32. Communication 40 yo mother from PR w/ appendiceal carcinoma: “In theory, we could operate, but should we?”
  • 33. Palliative Care & Surgery
  • 34. Palliative Surgical Care • Communication • Palliative surgery • Alleviating suffering
  • 35. Palliative Surgery "I hope we have taken another good step [gastrectomy] towards securing unfortunate people hitherto regarded as incurable or, if there should be recurrences of cancer, at least alleviating their suffering for a time." - Theodor Billroth, MD, 1881
  • 36. Young woman with history of locally advanced pancreatic cancer, presenting with abdominal pain, nausea/vomiting. Reviewing a palliative approach to gastric outlet obstruction.
  • 37. Alleviation of suffering There is more we can do
  • 38. Caring for patient at end-of-life A surgeon’s role?
  • 39. "I thought, 'I'm a doctor; I must know everything in the world about death and dying.' But, of course, I knew absolutely nothing." - Balfour Mount, MD Surgical Oncologist & Founder of Palliative Care Movement in N.America speaking on giving his first talk about Death & Dying
  • 40. from not-knowing to knowing
  • 41. “So I think healing has to do with slowing down, coming into the present, listening, accepting, forgiving, entering into community with, and healing is prevented by the opposites of those things.” - Balfour Mount, MD Surgical Oncologist & Founder of Palliative Care Movement in N.America A Wayfarer’s Journey: Listening to Mahler. http://www.shoppbs.org/product/index.jsp?
  • 42. CMO ≠continuous morphine only
  • 43. EOL Symptom management • Continue treatments that alleviate symptoms today. Stop those that alleviate potential symptoms in a decade. • Pain: if it’s there, treat it. • Eye, mouth, skin care. • Glycopyrrolate for secretions. • Educate family. • Engage chaplaincy and social work.
  • 44. • Complex decision-making • Unresolved pain • Complex symptoms • Psychosocial, cultural, spiritual needs • Frequent ED visits • Frequent hospitalizations • Long hospital stay (LOS) - in or out of ICU - without improvement When to consult palliative care?
  • 45. Palliative Pyramid Fig. 1. The palliative triangle. Interactions between the patient, the family, and the surgeon guide individual decisions regarding palliative care. The hope for potentially achievable goals is advanced as each participant of the palliative triangle fulfills specific obligations.
  • 46. Summary • Surgeons historically have played an important role in palliative care. • Communication is both a procedure and an art. • Surgery and Palliative Care: A potential partnership in alleviation of suffering.
  • 47. “Self-knowledge guides us in knowing when to give up on the hope of combating disease and when to soldier on; it prevents us from making decisions in which the real aim is to shore up our own personal defenses against insecurity; it shows us the sources of our own fears of death and lessens their acuteness; it outs our fears of passivity and impotence into perspective so that each failure of therapy is not the expense of reason. Most importantly, it enables us to fulfill our pastoral role as surgeons. This, and not the technology, is what being a doctor is all about." -Nuland S. A surgeon's reflections on the care of the dying. Surg Onc

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  4. [twitter]@atulgawande “But, if we can’t put out the fire, a good physician takes the patient’s hand and walks with him through the flames.” #baystateGR [/twitter]\n
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  23. [twitter]On Shared decision-making and surgery: Patients do not choose surgery for the sake of the experience, but rather for the outcome. (@Baystate_Health surgGR)[/twitter]\n\nBut doctor - she’s a fighter.\nI want to live.\n
  24. [twitter]On Shared decision-making and surgery: Patients do not choose surgery for the sake of the experience, but rather for the outcome. (@Baystate_Health surgGR)[/twitter]\n\nBut doctor - she’s a fighter.\nI want to live.\n
  25. [twitter]On Shared decision-making and surgery: Patients do not choose surgery for the sake of the experience, but rather for the outcome. (@Baystate_Health surgGR)[/twitter]\n\nBut doctor - she’s a fighter.\nI want to live.\n
  26. [twitter]On Shared decision-making and surgery: Patients do not choose surgery for the sake of the experience, but rather for the outcome. (@Baystate_Health surgGR)[/twitter]\n\nBut doctor - she’s a fighter.\nI want to live.\n
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  32. [twitter]The surgeon can alleviate patients' suffering through effective communication, palliative surgeries, and impeccable symptom management #hpm[/twitter]\n
  33. Palliative surgical examples:\ntreating bowel obstruction in patient with advanced cancer: venting gastronomy vs. resection\npericardial window\nconsideration of chest tube with pleuradesis vs. indwelling pigtail catheter\n
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  42. Team/patient/family needs help with complex decision-making and determination of goals of care. \nb. Patient has unresolved level of pain or other symptom distress for greater than 24 hours. \nc. Patient has unmet psychosocial, cultural or spiritual issues. \nd. Patient has frequent visits to Emergency Department (more than once per month for same diagnosis) \ne. Patient has more than one hospital admission for the same diagnosis in last 30 days. \nf. Patient has prolonged length of stay (greater than five days) without evidence of progress. \ng. Patient has prolonged stay in ICU and/or transferred from ICU to ICU setting without evidence of progress. \nh. Patient is in an ICU setting with documented poor prognosis.\n
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