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Mark McIntosh, MD, MPH
Department of Emergency Medicine
Medical Director of Palliative Care UF Health/Jax
Ashley Shreves, MD
Department of Emergency Medicine
Brookdale Department of Geriatrics and Palliative Medicine
Icahn School of Medicine at Mt. Sinai
The Emergency DePartment
The Latest Site for Palliative CAre
Palliative Care in Denver
objectives
• Be able to explain the difference between Palliative Care and Hospice
• Appreciate Balance Between Quality and Quantity of Life
• Describe Roadmap for Discussing Goals of Care with Patients/families at EOL
• Identify Useful Phrases in Speaking to Patients/families about EOL Care
• Consider Future Implications for Palliative Care Delivery
• They’re coming
• 50% of seniors visit ED last month of life
• 1/3rd cancer patients visit ED during last 2
weeks of life
• Their needs and goals are different
• Time is precious!
Why we Need to know
Smith AK. Health Affairs 2012
Barbera L. CMAJ 2010
“Under the influence of the more-is-better mentality, well-
intentioned clinicians and loving families can
inadvertently cause people to spend precious, fleeting
days at the end of a long illness in hospitals and ICUs,
instead of at home or other places they would rather
be…”
Ira Byock, MD
Former director of palliative care at
Dartmouth-Hitchcock Medical
Center
The Reality in the ED
What is Palliative Care?
Palliative care is medical care that specializes in the relief of
the pain, symptoms and stress of serious illness.
Conceptual Shift for Palliative Care
Source: Center to Advance Palliative Care (CAPC)
Diagnosis Death
Case Seen most Days in the ED ICU
• 89 yo female
• CC: Fever and SOB
• VS
• BP 100/50 HR 130 O2 sat 90% on NRB RR
35 temp 102
• Advanced dementia (G-tube feeds)
• No advance directives
• “Please do everything”
Next steps?
• What do you usually do?
• What do you want to do?
• What’s “the right thing”?
What’s most important to patients at EOL?
Steinhauser KE JAMA 2000
Don’t they want “everything” done?
Quality of life > quantity of life
Fried TR. N Engl J Med 2002
steps
• Understand basic EOL trajectories
• Learn communication skills to transition care
Recognize the eol Spending time in bed, high sx
Infections, feeding problems
Tough, need good PMH
EMS
Lunney JR JAMA 2003
Back to case
• Was this patient dying?
• Trajectory?
Now what?
• A. ICU, admit
• B. ICU, palliative care
• C. Talk to family about goals of care
• D. No clue
Why not talk to family?
• A. Time
• B. Legal
• C. Don’t want upset family
• D. Never taught
Smith AK. Ann Emerg Med 2009
Stone SC. J Palliat Med 2011
Meo N. J Palliat Med 2011
Ed approach to goals of care
• Do you want us to intubate her?
• If she codes, should we do CPR?
• Do you want us to put in a central line?
• Would she want pressors?
What happens?
• They get “everything”
• Why?
• Health literacy
• Communication
• Emotions
Volandes AE J Palliat Med 2008
Volandes AE J Palliat Med 2011
Volandes AE BMJ 2009
Quill TE Ann Intern Med 2009
Talking about dying: ground rules
• It will be awkward
• You will say “the wrong thing”
• It’s ok
• Use a roadmap
• Time limit
• When in doubt, prolong
GOC Roadmap “SPIKES”
• Setting
• Perception
• Invitation
• Knowledge
• Emotion (est. Goals)
• Summarize
ASK-TELL-ASK-TELL-ASK
Buckman and Baile
Setting and Intro
• Prepare for the Conversation
• Quiet room (bring a chaplain or nurse)
• Sit down
• Build trust
• “Tell me about your father…”
perception
• Patient/family understanding of medical facts
• Patients/families
• Weren’t told
• Told poorly
• Weren’t ready to hear
• “What have the doctors told you about…?”
• “How have things been going at home?”
Mitchell SL. N Engl J Med 2009
Weeks. N Engl J Med 2012
Knowledge or Medical explanation
• Big picture
• No jargon
• “It sounds like your mother’s health has really declined in
the past few months. I have to tell you, she is really sick
right now and I’m worried that she is dying.”
• Silence
Respond to the emotion
• Give some Space and use Silence
• Name the emotion (its “shocking” to me too)
• “Is it OK if I move forward to talk about the plan and the
options?”
ED: Have to get the Goals
• Hopes and worries, given new info
• Ask what patient would tell us if in the room
• Error: Asking family members to decide on life-
sustaining treatment for a patient, rather than asking
them to assess what their loved one would want
• “What’s most important?”
Summarize and Give Medical recommendation
• Be a doctor !!!
“Based on what we know about your mother’s condition and our discussion here, I’m going
to make some recommendations. Is that ok?”
• Need to know your options
• “Re-focus our efforts” BUT NEVER “Withdraw care”
• “Maximize comfort”
“I think we should focus our efforts on maximizing her comfort/QOL.”
●
“I do not think that we should use machines and other tools to try to
artificially prolong her life. I’m worried that would add to her suffering.”
Intubation and “code status”
• Meaningless discussion out of context – don’t use DNR
order to introduce dying
• Patients don’t want to be “full code”
• They want an outcome
• If intubation can’t meet goals, recommend against
• “Allow natural death”
Blinderman CD. JAMA 2012
CPR SuCCESS: Alive at Discharge
• Rule of thumb
• 17% = Hospitalized Patients with Cardiac Arrest
• -5% = For each significant diseased organ system
OK do the calculation: Patient with heart failure + dementia + pneumonia.
Negotiation/care plan
• Suggest limits, where appropriate
• Summarize your understanding
• “Hope for the Best, Prepare for the Worst” – underlying
principle
Palliative Care Referral Tool
A-B-C-D-E Checklist
Back to case
• Family room discussion 15 minutes with 4 children
• “We want everything”
• “It’s time to let her go”
• Family at bedside, crying, laughing
Palliative Care Predictions
• Palliative Care Trained Staff in the ED
• Advance Directive Registries
• Reimbursement changes (pay for the discussion, PC
reimbursement, end of life reimbursement, PC for ACO )
Patient Enters Triage Area
Palliative Care
Liaison
Triage algorithm: Just a
few questions (1-2) the
triage nurse can ask the
patients/families for early
identification
Referral to Palliative Care Team
Symptom Management
(pain, nausea, vomiting, etc.)
Hospice Referral
ED algorithm:
Series of questions
and observation that
will result in
appropriate
ED management or
triage
PC Nurse Navigator ED Pilot Project
Advanced Directives
• 181 Established previously
• 167 HCS/Proxy/DPOA/Guardian
• 18 DNR
• 514 Addressed in ED
• 491 HCS/Proxy/ DPOA/Guardian
• 35 DNR
• 445 Not Addressed
Consults:
10/12-2/13 3/13-8/13 3/13-3/14
Hospice 20 48 33
Palliative Care 68 199 304
Both - 37 74
Disposition:
• 1140 Patients and families served from 03/2013-03/2014
n %
Admitted 776 68
Home 42 4
Hospice 62 5
Died 33 2.9
LTC/SNF 2 .2
Others 224 20
Advance Directive Registries
• 1/3 of Health Care Surrogates suffer negative effects
of making decisions for months to years
Ann Intern Med. 2011 Mar 1;154(5):336-46
• States to connect advance directive registries to
health information exchanges.
Epic Hints
Go to “MEDIA Tab” to Find:
Advance Directives/Health care Surrogate
Living Will
HealthCare Surrogate
• Pay for the discussion
• PC and End of Life
reimbursement
• PC for ACO: Hospice of
Michigan Model
Reimbursement is Changing
References
• Communication skills
• Mastering Communication with Seriously Ill Patients
• Bedside info
• EPERC Fast Facts
• ED-Pal Care initiative
• IPAL-EM (CAPC)
• EM-Pal Care course
• EPEC-EM
Summary
• Quality > quantity at EOL
• EOL communication is a procedure
• Roadmap and key phrases should empower you to start talking
• Palliative care = health care’s future and salvation…
• Join the movement now!
Consults to Palliative Care and Hospice
• 107 Hospice
• 33 Hospice only
• 74 hospice and palliative care
• 378 Palliative Care
• 304 Palliative Care only
• 74 both PC and hospice

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Palliative care

  • 1. Mark McIntosh, MD, MPH Department of Emergency Medicine Medical Director of Palliative Care UF Health/Jax Ashley Shreves, MD Department of Emergency Medicine Brookdale Department of Geriatrics and Palliative Medicine Icahn School of Medicine at Mt. Sinai The Emergency DePartment The Latest Site for Palliative CAre
  • 3. objectives • Be able to explain the difference between Palliative Care and Hospice • Appreciate Balance Between Quality and Quantity of Life • Describe Roadmap for Discussing Goals of Care with Patients/families at EOL • Identify Useful Phrases in Speaking to Patients/families about EOL Care • Consider Future Implications for Palliative Care Delivery
  • 4. • They’re coming • 50% of seniors visit ED last month of life • 1/3rd cancer patients visit ED during last 2 weeks of life • Their needs and goals are different • Time is precious! Why we Need to know Smith AK. Health Affairs 2012 Barbera L. CMAJ 2010
  • 5. “Under the influence of the more-is-better mentality, well- intentioned clinicians and loving families can inadvertently cause people to spend precious, fleeting days at the end of a long illness in hospitals and ICUs, instead of at home or other places they would rather be…” Ira Byock, MD Former director of palliative care at Dartmouth-Hitchcock Medical Center
  • 6. The Reality in the ED
  • 7. What is Palliative Care? Palliative care is medical care that specializes in the relief of the pain, symptoms and stress of serious illness.
  • 8. Conceptual Shift for Palliative Care Source: Center to Advance Palliative Care (CAPC) Diagnosis Death
  • 9. Case Seen most Days in the ED ICU • 89 yo female • CC: Fever and SOB • VS • BP 100/50 HR 130 O2 sat 90% on NRB RR 35 temp 102 • Advanced dementia (G-tube feeds) • No advance directives • “Please do everything”
  • 10. Next steps? • What do you usually do? • What do you want to do? • What’s “the right thing”?
  • 11. What’s most important to patients at EOL? Steinhauser KE JAMA 2000
  • 12. Don’t they want “everything” done? Quality of life > quantity of life Fried TR. N Engl J Med 2002
  • 13.
  • 14. steps • Understand basic EOL trajectories • Learn communication skills to transition care
  • 15. Recognize the eol Spending time in bed, high sx Infections, feeding problems Tough, need good PMH EMS Lunney JR JAMA 2003
  • 16. Back to case • Was this patient dying? • Trajectory?
  • 17. Now what? • A. ICU, admit • B. ICU, palliative care • C. Talk to family about goals of care • D. No clue
  • 18. Why not talk to family? • A. Time • B. Legal • C. Don’t want upset family • D. Never taught Smith AK. Ann Emerg Med 2009 Stone SC. J Palliat Med 2011 Meo N. J Palliat Med 2011
  • 19. Ed approach to goals of care • Do you want us to intubate her? • If she codes, should we do CPR? • Do you want us to put in a central line? • Would she want pressors?
  • 20. What happens? • They get “everything” • Why? • Health literacy • Communication • Emotions Volandes AE J Palliat Med 2008 Volandes AE J Palliat Med 2011 Volandes AE BMJ 2009 Quill TE Ann Intern Med 2009
  • 21. Talking about dying: ground rules • It will be awkward • You will say “the wrong thing” • It’s ok • Use a roadmap • Time limit • When in doubt, prolong
  • 22. GOC Roadmap “SPIKES” • Setting • Perception • Invitation • Knowledge • Emotion (est. Goals) • Summarize ASK-TELL-ASK-TELL-ASK Buckman and Baile
  • 23. Setting and Intro • Prepare for the Conversation • Quiet room (bring a chaplain or nurse) • Sit down • Build trust • “Tell me about your father…”
  • 24. perception • Patient/family understanding of medical facts • Patients/families • Weren’t told • Told poorly • Weren’t ready to hear • “What have the doctors told you about…?” • “How have things been going at home?” Mitchell SL. N Engl J Med 2009 Weeks. N Engl J Med 2012
  • 25. Knowledge or Medical explanation • Big picture • No jargon • “It sounds like your mother’s health has really declined in the past few months. I have to tell you, she is really sick right now and I’m worried that she is dying.” • Silence
  • 26. Respond to the emotion • Give some Space and use Silence • Name the emotion (its “shocking” to me too) • “Is it OK if I move forward to talk about the plan and the options?”
  • 27. ED: Have to get the Goals • Hopes and worries, given new info • Ask what patient would tell us if in the room • Error: Asking family members to decide on life- sustaining treatment for a patient, rather than asking them to assess what their loved one would want • “What’s most important?”
  • 28. Summarize and Give Medical recommendation • Be a doctor !!! “Based on what we know about your mother’s condition and our discussion here, I’m going to make some recommendations. Is that ok?” • Need to know your options • “Re-focus our efforts” BUT NEVER “Withdraw care” • “Maximize comfort” “I think we should focus our efforts on maximizing her comfort/QOL.” ● “I do not think that we should use machines and other tools to try to artificially prolong her life. I’m worried that would add to her suffering.”
  • 29. Intubation and “code status” • Meaningless discussion out of context – don’t use DNR order to introduce dying • Patients don’t want to be “full code” • They want an outcome • If intubation can’t meet goals, recommend against • “Allow natural death” Blinderman CD. JAMA 2012
  • 30. CPR SuCCESS: Alive at Discharge • Rule of thumb • 17% = Hospitalized Patients with Cardiac Arrest • -5% = For each significant diseased organ system OK do the calculation: Patient with heart failure + dementia + pneumonia.
  • 31. Negotiation/care plan • Suggest limits, where appropriate • Summarize your understanding • “Hope for the Best, Prepare for the Worst” – underlying principle
  • 34. Back to case • Family room discussion 15 minutes with 4 children • “We want everything” • “It’s time to let her go” • Family at bedside, crying, laughing
  • 35. Palliative Care Predictions • Palliative Care Trained Staff in the ED • Advance Directive Registries • Reimbursement changes (pay for the discussion, PC reimbursement, end of life reimbursement, PC for ACO )
  • 36. Patient Enters Triage Area Palliative Care Liaison Triage algorithm: Just a few questions (1-2) the triage nurse can ask the patients/families for early identification Referral to Palliative Care Team Symptom Management (pain, nausea, vomiting, etc.) Hospice Referral ED algorithm: Series of questions and observation that will result in appropriate ED management or triage
  • 37. PC Nurse Navigator ED Pilot Project
  • 38. Advanced Directives • 181 Established previously • 167 HCS/Proxy/DPOA/Guardian • 18 DNR • 514 Addressed in ED • 491 HCS/Proxy/ DPOA/Guardian • 35 DNR • 445 Not Addressed
  • 39. Consults: 10/12-2/13 3/13-8/13 3/13-3/14 Hospice 20 48 33 Palliative Care 68 199 304 Both - 37 74
  • 40. Disposition: • 1140 Patients and families served from 03/2013-03/2014 n % Admitted 776 68 Home 42 4 Hospice 62 5 Died 33 2.9 LTC/SNF 2 .2 Others 224 20
  • 41. Advance Directive Registries • 1/3 of Health Care Surrogates suffer negative effects of making decisions for months to years Ann Intern Med. 2011 Mar 1;154(5):336-46 • States to connect advance directive registries to health information exchanges.
  • 43. Go to “MEDIA Tab” to Find: Advance Directives/Health care Surrogate
  • 46. • Pay for the discussion • PC and End of Life reimbursement • PC for ACO: Hospice of Michigan Model Reimbursement is Changing
  • 47. References • Communication skills • Mastering Communication with Seriously Ill Patients • Bedside info • EPERC Fast Facts • ED-Pal Care initiative • IPAL-EM (CAPC) • EM-Pal Care course • EPEC-EM
  • 48.
  • 49. Summary • Quality > quantity at EOL • EOL communication is a procedure • Roadmap and key phrases should empower you to start talking • Palliative care = health care’s future and salvation… • Join the movement now!
  • 50.
  • 51.
  • 52.
  • 53. Consults to Palliative Care and Hospice • 107 Hospice • 33 Hospice only • 74 hospice and palliative care • 378 Palliative Care • 304 Palliative Care only • 74 both PC and hospice

Notas do Editor

  1. Thank you for inviting me to come speak to you about this topic that is near and dear to my heart. My background – I The Emergency Department:  The Latest Sight for Palliative Care Add UF stuff http://hscj.ufl.edu/emergency-medicine/RiversideProject.aspx   <number>
  2. TTD: Change this slide Review Saved material Finish book. Update data with Stephen <number>
  3. Objectives1.  What is the Difference between Palliative Care and Hospice2.  Understand and appreciate the balance between Quantity and Quality of Life3.  Be able to follow the road map for discussing Goals of Care in the Emergency Department4.  Introduce a useful phrases which can be utilized while communicating with patients and families about End of Life5.  Describe the PC Service at UF Health:  A useful resource for the emergency physician <number>
  4. Think about the last shift you had: Bed 7 85 yo puffing away on CPAP, just discharged 2 days before and is back for CHF. Bed 8 Agitated man with Alzheimers whose J tube had fallen out, Bed 9 patient with MTW dialysis, with Cirrhosis, Copd, and now hypotensive with newly diagnosed pneumonia and a room air sat of 85%. Under the best of circumstances wether I intubate or not will still have 2 failing organ systems. Common thread? All daling with medical issues surrounding EOL care. There are changing expectations in health care. For these pts presenting with advanced illnesses, expectation that we consider alternate care pathways and not reflexively “do everything” Gateway to Hospital for most severely-chronically ill patients Treatments are initiated Trajectory is set Triage (often to ICU) occurs Initial discussions with patients, families Must know: Do they understand diagnosis, Do they have grasp of prognosis, What are their goals, what are they willing to risk to achieve those goals That 75% of ED patients have no advanced directives? That most patients don’t share their treatment or end of life wishes with anyone until crisis occurs? That 50% of seniors have ED visits in the last month of life? That 5% of Medicare patients are responsible for 30% of the Medicare budget and almost 80% of that bill is spent the last 30 days of life. That most patients want to die at home yet 70% die in health care facilities? <number>
  5. Patients with cancer whose illnesses advance despite treatment and find themselves with waning strength and energy should “be cautious about excessive medical care,” Ira Byock, a former director of palliative care at Dartmouth-Hitchcock Medical Center, said in an essay accompanying the study. Gawande’s piece examines a medical system and culture which, he says, is built around the slim possibility that patients who have a terminal diagnosis and have exhausted most of their options will be truly helped by the next experimental drug trial or technological assist. Those options should be available for those who want them, he says — the problem is, that for most, they won’t prolong survival, improve quality of life or allow patients to do the things they say are most important to them, such as spending time with family or being mentally aware Emanuel But the medical community’s reluctance to broach this topic may ultimately deprive a patient and their family from what Emanuel (J Pall Med 2007) describes as the three essential tasks of dying: logistical planning (finances and care for dependents), relational tasks (mending bridges, leaving a legacy) and personal reflection and acceptance <number>
  6. Send the patient to ED they can decide what the patient and family want!!!! Greg Henry EP’s often struggle by being caught in the middle between the suffering pagtient and unprepared families. I don’t need to tell you that many patients with chronic , terminal diseases are frequent visitors 1/500 patients dies in the ED 3% subsequently die on admission. Countless patients learn froma a doctor they have never seen before and may never see again that they have a fatal disease. Others get treated, aggressively and repeadedly for dangerous flare- ups with conditions like COPD CHF without anyone having the time or the skills to explain that the chronic disease they have been living with is now the chronic disease that they are slowly dying from. <number>
  7. What care would we choose for ourselves or our loved ones. Palliative care is a medical specialty in the United States, committed to helping patients with serious illness and their families achieve the best possible quality of life. It focuses on relief of the pain, symptoms and stress of a serious illness and is delivered by a team of health professionals, usually a doctor, nurse, social worker and others who have special training and expertise in helping people with serious illness and in helping their families. Palliative care is delivered at the same time as care that is meant to cure or to prolong life and has been associated in several studies with marked improvements in quality of life as well as a longer life for patients receiving palliative care in addition to usual disease management care." "Many people ask me, 'What is the difference between palliative care and hospice?' Hospice is actually a form of palliative care which has a federal Medicare and other insurance benefit attached to it, but it is limited to palliative care only for the dying. In order to access hospice, you have to have a short prognosis and you have to make a decision that you're ready to give up life-prolonging treatment or insurance coverage for life-prolonging treatment. Palliative care is a much broader version in that you can have palliative care regardless of what other treatments may be helping you, and you can have it from the point of diagnosis. And many people who receive palliative care are either cured or live for a very long time -- years, sometimes decades -- with whatever the chronic illness is that they are living with." "One of my major concerns in our field is our use of language. Many people working in palliative care or interested in palliative care persist in calling it end-of-life care. The problem with calling it end-of-life care is that many people who could benefit from and who need palliative care are, frankly, not at the end of life. They may be pursuing a cure -- say, for example, a 25-year-old with leukemia or lymphoma. They may be likely to live for many years with a serious chronic illness like heart failure or emphysema or end-stage renal disease or dementia or stroke. They're not at the end of life. They may live five years. They may live ten years. And to the extent that we use end-of-life language, terminal language, death-and-dying language, we unintentionally exclude the vast majority of people who need and could benefit from palliative care. We need to really think about the impact of our language on the audiences we're trying to reach -- patients and families foremost among them, as well as practitioners. To the extent that we describe palliative care as end-of-life care, doctors say, 'Well, my patient's not at the end of life. This is not appropriate for my patient.' So language is critically important, and I think we need to reflect as a field on our use of language and be very careful to make sure that we describe palliative care completely independent of prognosis." <number>
  8. Palliative care and hospice are similar but distinct in important ways. Both are rooted in the philosophy that good patient care extends beyond a disease and its symptoms to encompass the spiritual and psychological well being of a patient and their family. By definition, however, hospice care is limited to patients with a life expectancy of less than 6 months. Palliative care, on the other hand, is defined much more broadly to encompass conditions that are life shortening but with no defined time frame. (I often emphasize this difference when introducing the concept of palliative care as it opens the door to an end of life discussion without causing the patient to hyper-focus on a specific prognostic time frame.) Patients with advanced COPD, AIDs, CHF, Alzheimer’s and stroke may all qualify for palliative care. Importantly, patients who are in palliative care can still receive disease-modifying treatments such as chemotherapy, radiation and surgery. People want input into their end of life decisions. When you look at the palliative care literature people with life shortening illnesses want three major things: relief of pain, not to be a burden on their family and to have as much control over decision making as possible Patient may present with Glioblastoma: Initial phase of our management is really based on curative treatment. PC on the otherhand is non curative symptom management. We treat their nausea, pain, vomiting and diarrhea. That’s PC. As the persona goes along their continuum, as they go from presentation of their illness to terminally ill, What happens is we start doing less curative care measures and more palliative or non-curative measures <number>
  9. We struggle with knowing what the right thing to do is when we’re seeing pts with advanced illnesses coming in with acute, severe decompensations. It’s not always clear and it won’t always be clear but I do think that many of us worry that our traditional approach, where by we assume the goal is to keep living as long as possible, may not be the right one for everyone… <number>
  10. Factors considered important at the EOL by pts, families, physicians, and other care providers. JAMA 2000 44 items asked to rank -pain and sx management, preparation for death, achieving sense of completion, decisions about tx preferences, being tx’d as whole person So these are the issues on the patient’s mind. What do they care about? How they live then how long they live. And it’s striking to note how little medical stuff they rate as important. <number>
  11. Terri Fried NEJM Understanding the tx preferences of seriously ill pts N = 226 pts with advanced illnesses (CHF, COPD, cancer) -low burden = hospital admit, some noninvasive testing, iv abx -high burden = ICU level care, x 1 mo -if bad outcome was death, people didn’t decline treatment until probability high (> 90%) -if bad outcome functional/cognitive impairment, once chance 50%, most did not want -reality is that most patients don’t want “everything” done, use of every technology to eak every last bit of life out of them, if those treatments aren’t going to restore them to a reasonable level of health <number>
  12. June R Lunney JAMA 2003 patterns of functional decline at the EOL . Turns out that there are 4 classic patterns of decline, depending on the pt’s underlying disease process. These patterns can be recognizable in the ED setting…not always. But sometimes, especially with an EMR, a few pointed questions and a glimpse at the chart can suggest that someone is on a dying trajectory. <number>
  13. Smith AK 2009: residents no training <number>
  14. What are we doing here? Focusing on the questions that we need answers to? This actually makes a lot of sense. I need to know what I need to do. Patient autonomy principle tells me you get to decide. So why don’t I just ask you. 20% thought mechanical ventilator was the same thing as an 02 tank <number>
  15. Angelo Volandes has done much of the work here. It turns out that if you’re <number>
  16. <number>
  17. Steps of the conversation:   I.Introduce yourself and learn who you are speaking too. Either ask the family what they know of the current situation or say that you’ll begin by describing the situation.   II.Setting the context with the patient/surrogate: Start with a brief summary of the patient’s medical condition (diagnosis) and expectations (prognosis). Always consider not just the current acute illness, but the overall situation. Check for understanding. Identifying misunderstandings and fears that may exist about the illness or hopes for the future. Explain the current medical plan and recommendations including steps to assure comfort. The clear message should be “We care and will never stop treating and attending to the patient.” Affirm the therapeutic relationship as a transition to discussing CPR or other questions about limiting treatment. “We need to discuss some other treatments. Since I know patients have different views about what or what not to do, I always discuss these issues to make sure I am doing what the patient wants. I want to make sure I know and respect your values and choices.” Exploring Goals/Provide specific outcome information: Identify goals: If the patient’s goals are clear from previous documentation or advance directives, start the conversation by summarizing what you understand and ask for agreement. For example you might say, “I reviewed your power of attorney for health care and I understand that you have already decided that you would not want us to attempt to resuscitation in the event you got even sicker and your heart stopped.” or Explore goals: If you don’t know what the goals are, you will need to start by asking more open-ended questions. For example, you might say, “Given what we have just discussed about your illness, can you tell me what you would want or would not want from medical care at this point in your life? What goals are important to you?” (Listen and explore with the patient or surrogate. The goals here are more focused on the person rather then on simply goals of treating the disease. There can be multiple goals. Some goals may have more importance. Suggest realistic goals and address goals that are contradictory. Goals can and will change over time. Remember plans to treat the disease are different than the goals of the patient) Provide specific information about resuscitation in context of the medical condition, prognosis, and discussed goals: “I would like to specifically talk about what you would want if your heart and breathing failed. Given what we know about your current state of health, if your heart and breathing stopped and we attempted resuscitation I would expect ……”. (Explain outcomes if resuscitation were attempted. Consider if there is a goal to treat and if it is possible to treat/manage severe cardiopulmonary symptoms to prevent arrest.) Framing the question: Here two approaches might be taken depending on the patient’s goals and medical condition. You could make a recommendation not to attempt resuscitation. “In my opinion, given your goals and medical condition, I don’t think it makes sense to attempt resuscitation. It is not likely to work and could put you through unwanted pain and suffering.” More frequently the question of resuscitation will be a matter of considering potential burdens and benefits that the patient will need to consider. “Given what we have discussed, you need to consider how likely attempting CPR will help and harm you. I can respect either decision, I just want to make sure you have all the information you need and have an opportunity to let me know. If you decide to have resuscitation attempted, we could also clarify what you want if we keep you alive, but in a greatly diminished quality of life.” Closing the discussion: Assess if the patient/surrogate is ready to make a decision. If not, check to see if there are other questions. Then establish a decision process (you will talk with your daughter) and set a time to review the topic again (could you reach a decision by …)   IVWriting the orders: It is important that the orders are complete and clear so that all other health professionals caring for the patient understand what to do or not to do. At Gundersen Lutheran Medical Center we have four order sets for code orders. They are: Full; O-DNR; O-DNI/DNR; and P-DNR. We do not allow an order for attempt CPR but do not intubate. If the patient does not want intubation but does want CPR (a code blue) you’ll need to discuss the reasons for this. Almost always it is because the patient fears long term ventilation. This concern can be address by having a Full code order and documenting the preference to stop ventilation and to extubate if it is need for long term. (See attached order sheet as a guide.)   At discharge, if the patient still has orders not to attempt resuscitation, it is important to consider if those orders should be provided for the patient at home or in the nursing home. If the patient is being transferred to a nursing home a POLST form should be completed. (POLST form is a bright yellow form with standardized orders in 4 distinction sections.)   <number>
  18. Mitchell: only 18% of HCP received any prognostic info, only 1/3 received info about expected complications of disease Weeks NEJM: 1100 terminal cancer pts (colon and lung); 2/3rds did not understand that chemo not curative Many things happen here – families often forced to say out loud that pt dying. Get clues about where they are in terms of acceptance. Ability to clarify misinformation that’s been given. Will immediately give you a sense for whether or not this is “low hanging fruit” <number>
  19. Good pain and symptom contol Strengthen relationships with loved one Relieving burden on family Achieving sense of control Avoid inappropriate prolongation of dying (Leads to AD discussion) <number>
  20. Talking about Transition is uncomfortable for patient, family and clinicians alike. Ignore transitions and go straight to CPR and Mechvent discussion. Never say there is nothing more that can be done. Shifting goals must come from patient values. “When her breathing worsens, we will give medicines to ease any discomfort she has. I do not recommend placing your mom on life support/respirator/breathing machine as this will only prolong her dying, and may worsen her suffering.” “When her heart stops, I don’t think we should interfere with that process. It sounds like we should allow her to have a natural death.” And, do NOT have pts/families sign DNR paperwork In one analysis, a series of fourteen studies between 1980-1991 were combined with the following overall results.2 13.5% of patients who underwent CPR survived to hospital discharge. Survival to discharge (StD) was negatively influenced by several factors. Among all individuals with cancer, the StD was 5.8% and in those with metastatic cancer, the StD was zero. An overview of the previously cited studies shows that many patients who were resuscitated successfully had some combination of fractured ribs, fractured sternum, aspiration pneumonia, and mediastinal hemorrhage. Note also that approximately 10% of patients remained in a persistent vegetative state (irreversible coma). Potential neurologic complications are not restricted to coma. In another series, 155 survivors of CPR were followed up and periodically evaluated by neurologists and neuropsychologists.8 Three months after CPR, 60% of the patients were noted to have moderate to severe cognitive impairment. At 12 months, 48% still had moderate to severe impairment. <number>
  21. Discussing CPR with hospitalized patients or their surrogates   A few tips: CPR should never be the first thing discussed. Initially approach the issue of CPR as a discussion rather than “I have a question that you must answer now.” Always make sure you review and understand any previously written instructions or request the patient has made regarding resuscitation as recorded in a physician’s order or in an advance directive. If you need to work with a surrogate, make sure you have the most appropriate surrogate.   Steps of the conversation:   I.Introduce yourself and learn who you are speaking too. Either ask the family what they know of the current situation or say that you’ll begin by describing the situation.   II.Setting the context with the patient/surrogate: Start with a brief summary of the patient’s medical condition (diagnosis) and expectations (prognosis). Always consider not just the current acute illness, but the overall situation. Check for understanding. Identifying misunderstandings and fears that may exist about the illness or hopes for the future. Explain the current medical plan and recommendations including steps to assure comfort. The clear message should be “We care and will never stop treating and attending to the patient.” Affirm the therapeutic relationship as a transition to discussing CPR or other questions about limiting treatment. “We need to discuss some other treatments. Since I know patients have different views about what or what not to do, I always discuss these issues to make sure I am doing what the patient wants. I want to make sure I know and respect your values and choices.” Exploring Goals/Provide specific outcome information: Identify goals: If the patient’s goals are clear from previous documentation or advance directives, start the conversation by summarizing what you understand and ask for agreement. For example you might say, “I reviewed your power of attorney for health care and I understand that you have already decided that you would not want us to attempt to resuscitation in the event you got even sicker and your heart stopped.” or Explore goals: If you don’t know what the goals are, you will need to start by asking more open-ended questions. For example, you might say, “Given what we have just discussed about your illness, can you tell me what you would want or would not want from medical care at this point in your life? What goals are important to you?” (Listen and explore with the patient or surrogate. The goals here are more focused on the person rather then on simply goals of treating the disease. There can be multiple goals. Some goals may have more importance. Suggest realistic goals and address goals that are contradictory. Goals can and will change over time. Remember plans to treat the disease are different than the goals of the patient) Provide specific information about resuscitation in context of the medical condition, prognosis, and discussed goals: “I would like to specifically talk about what you would want if your heart and breathing failed. Given what we know about your current state of health, if your heart and breathing stopped and we attempted resuscitation I would expect ……”. (Explain outcomes if resuscitation were attempted. Consider if there is a goal to treat and if it is possible to treat/manage severe cardiopulmonary symptoms to prevent arrest.) Framing the question: Here two approaches might be taken depending on the patient’s goals and medical condition. You could make a recommendation not to attempt resuscitation. “In my opinion, given your goals and medical condition, I don’t think it makes sense to attempt resuscitation. It is not likely to work and could put you through unwanted pain and suffering.” More frequently the question of resuscitation will be a matter of considering potential burdens and benefits that the patient will need to consider. “Given what we have discussed, you need to consider how likely attempting CPR will help and harm you. I can respect either decision, I just want to make sure you have all the information you need and have an opportunity to let me know. If you decide to have resuscitation attempted, we could also clarify what you want if we keep you alive, but in a greatly diminished quality of life.” Closing the discussion: Assess if the patient/surrogate is ready to make a decision. If not, check to see if there are other questions. Then establish a decision process (you will talk with your daughter) and set a time to review the topic again (could you reach a decision by …)   IVWriting the orders: It is important that the orders are complete and clear so that all other health professionals caring for the patient understand what to do or not to do. At Gundersen Lutheran Medical Center we have four order sets for code orders. They are: Full; O-DNR; O-DNI/DNR; and P-DNR. We do not allow an order for attempt CPR but do not intubate. If the patient does not want intubation but does want CPR (a code blue) you’ll need to discuss the reasons for this. Almost always it is because the patient fears long term ventilation. This concern can be address by having a Full code order and documenting the preference to stop ventilation and to extubate if it is need for long term. (See attached order sheet as a guide.)   At discharge, if the patient still has orders not to attempt resuscitation, it is important to consider if those orders should be provided for the patient at home or in the nursing home. If the patient is being transferred to a nursing home a POLST form should be completed. (POLST form is a bright yellow form with standardized orders in 4 distinction sections.)     How to estimate if hospitalized patient may be alive at discharge following a CPR attempt.   The estimated rate of success (alive at discharge) is approximately 17% when CPR is attempted on large populations of patients who suffer cardiac arrest in the hospital.   Rule of thumb: For each significantly diseased organ system subtract 5% from the 17%.   So for a patient with only heart failure, the success rate drops to 12%, while for a patient with heart failure, progressive dementia, and acute pneumonia the chance of success drops to 2% or certainly less than 5%.   Remember: Patients and families often think of CPR as a highly effective intervention (45-85% success rate) and having few to no complications.   <number>
  22. Train the Staff: EPEC EM, IpaL EM on Capc, PC section of acep Triage algorithm (for triage or Patient care nurse): Would you be surprised if this patient died in the next year? If no then notify liaison Will this patient be able to understand and communicate desires/goals of care or do we need to establish family member to assist in making medical decisions? Does this patient have symptoms of pain, anxiety or nausea that will require rapid response? Is this patient at risk of frequent visits to the emergency department: resides at nursing home, long term care facility or requires home care Palliative Care Liaison/Nurse Manager/Social Worker/Volunteer algorithm Does this patient have symptoms that need to be actively managed by medical team? If yes then notify staff and activate symptom management protocol (e.g. pain, vomiting, anxiety…) Does this patient need to have health care surrogate established? Obtain Access ED case manager or chaplain Palliative care consult if will require meeting with family to establish goals of care (often will not need PC specialist) Consider palliative Care consult Cardiac arrest with successful resuscitation Does this patient have dyspnea at rest when stable (End Stage COPD, NYHA Class IV CHF) Patient is unable to carry out any activity without discomfort due to underlying disease process such as CHF or COPD Has this patient with COPD had weight loss greater than 10% over past 6 months or been ventilator dependent for >72 hours over past year Patient with Dementia or history of CVA: Bed bound (unable to sit independently), unintelligible speech of <5 words, incontinent of stool or urine, poor healing of large decubiti Does this patient with liver disease have recurrent ascites, encephalopathy or recurrent variceal bleeding Weight loss > 10% in 6 months (FTT) or continued weight loss despite tube feedings Not seeking treatment for cancer but still may be receiving Palliative Chemotherapy or radiation Does this HIV patient have what appears to be >33% with loss (emaciated) Has this patient have a chronic illness that requires frequent ED visits and hospitalizations Does this patient have end stage kidney disease and refuse dialysis Consider Hospice Consult Has this patient been or currently is a hospice patient Does this patient have terminal illness or in vegetative state <number>
  23. 34 admission to hospice: 26 GIP, 7 home with hospice and 1 SNF Challenges: ED structure and chaos Communication and contrarian views of specialty services Staff and resident turnover Evaluation and tracking tools Concerns about losing revenue <number>
  24. Ann Intern Med. 2011 Mar 1;154(5):336-46. doi: 10.7326/0003-4819-154-5-201103010-00008. Systematic review: the effect on surrogates of making treatment decisions for others. Wendler D, Rid A. Several states have created online advance directive registries with the intent of connecting them to statewide health information exchanges (HIEs), according to an article in American Medical News. Recently, Virginia became the latest state to take this action, joining Idaho, Montana, and West VirginiaRead more: States to connect advance directive registries to HIEs - FierceHealthIT http://www.fiercehealthit.com/story/states-connect-advance-directive-registries-hies/2012-01-05#ixzz2evRXxDHh Subscribe at FierceHealthIT Yet need system to make this possible. Respecting choices story Advance directive Registry like Florida Shots http://www.hemlockflorida.org/N-WV-advance-directive-registry.htm http://www.azsos.gov/adv_dir/ <number>
  25. Hover to discover. <number>
  26. This really helps me to direct my goals of care discussion. I can be a real Doctor and help make recommendations based on previous discussions. <number>
  27. Its expensive to Die in America 5% of meicare patients are responsivle for 30 % of the Medicare budget 80% of that is spent in last 30 days of life. Bill as critical care time. <number>
  28. Listen to Ashley’s Podcast #93 on Emcrit We as trained physicians have a better grasp of the complexities and nuances of a situation. It should be our responsibility to step up and shoulder some fo the burden of the decision making. I know this is overwhelming but if it helps I can share with you my suggestions and what I might do if someone I loved was in this difficult situation. There is a fundamental reason we go into EM. We want to save the patient. The last thing we often want to do is work with the dying patient. It is considered a failure. Don’t die on my shift. How can we change this mentality. <number>
  29. yours <number>