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The Care of Patients with Life-Threatening Illness. Susan Merel, MD Assistant Professor, General Internal Medicine Hospital Medicine Program and Palliative Care Service 1/8/13. Approach to the seriously ill patient Communication Common issues Establishing goals of care

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The care of patients with life threatening illness

The Care of Patients with Life-Threatening Illness

Susan Merel, MD

Assistant Professor, General Internal Medicine

Hospital Medicine Program and Palliative Care Service



Approach to the seriously ill patient


Common issues

Establishing goals of care

Advanced Directives

Code status




Palliative care

Palliative Care

  • Focus on relieving suffering, improving quality of life for patients with advanced illness

    • Communication with patients and families

    • Establishing goals of care

    • Help with decision-making

    • Symptom management

    • Coordination of services

Morrison RS, Meier DE NEJM 2004

Case 1

Case #1

  • 47 yo woman w/ severe alcoholic hepatitis

    • Multiple complications including renal failure, respiratory failure.

    • Required intubation and respiratory support, multiple procedures, now extubated.

    • Unable to get out of bed, getting tube feeds.

    • Hepatology estimates 6-month mortality at 75%

Case 11

Case #1

  • The patient has been asking to go home.

  • Her sister, who is her primary caregiver, wants to continue aggressive care.

  • What do you do?

Conducting a family meeting

Conducting a Family Meeting

  • Establish patient’s knowledge

  • Learn about the patient as a person

  • Determine hopes, fears/concerns

  • Work together to make a decision

    • Do not be afraid to make recommendations

  • Establish follow-up and continued support

Conducting a family meeting1

Conducting a Family Meeting

  • Establish the patient’s understanding

    • What do you understand about your illness?

    • From your perspective, what is happening with your illness, what are the plans for treatment?

    • From your perspective, how is this illness affecting you and your family?

  • What are your hopes?

    • What else are you hoping for?

    • Knowing how sick you are, what are you hoping for for the rest of your time?

Conducting a family meeting2

Conducting a Family Meeting

  • What are your fears or concerns?

    • What are you worried about?

    • Expanded social history

      • What makes life worth living to you?

      • What was life like before you got sick?

    • Spiritual history

      • Where do you get your strength?

The care of patients with life threatening illness

Quill, T. E. JAMA 2000;284:2502-2507

How you communicate matters

How you communicate matters

  • Increased proportion of family speech associated with increased family satisfaction and decreased conflict with physicians

  • Intervention to improve communication in ICU

    • Guidelines for conferences including eliciting values, acknowledging emotions etc.

    • Intervention patients with fewer “nonbeneficial interventions”

    • Intervention families with less guilt, anxiety, depression, PTSD symptoms

McDonagh JR et al, Crit Care Medicine 2004; Lautrette A et al, NEJM 2007;

Case 12

Case #1

Palliative care consult completed

Patient understands that she is dying.

Patient and sister express strong wish that patient reunites with family and die at the sister’s house.

Patient enrolled in home hospice.

Lives about 2 weeks.

Is able to interact with family, see estranged relatives.

Dies comfortably with family present.

Hospice care

Hospice Care

  • Philosophy of care focusing on comfort at the end of life

  • Limited to a prognosis of < 6 months

  • Usually paid for by insurance

  • Can occur at home or in a facility

    • Home hospice patients need additional support

Case 2

Case # 2

  • 87 year old woman admitted with atrial fibrillation and heart failure

    • PMH: Stroke in the past, severe osteoarthritis

    • Social: Former smoker. Lives in assisted living.

    • Chest xray on admission is abnormal.

Case 21

Case # 2

  • You believe this mass is cancer.

  • The patient does not want invasive diagnostic procedures.

  • She wants to know how much longer she has to live.

Why discuss prognosis

Why discuss prognosis?

  • Patients want to know

  • Many interventions we offer are risky and/or burdensome

  • Accurate prognostic information may change patients’ decisions

    • 41% of older patients favored CPR before learning that probability of survival to discharge was 10-17%; after learning that, only 22% did

  • Required for hospice eligibility

Murphy DJ et al, New Engl J Med 1994

Do physicians provide accurate prognoses near the end of life

Do physicians provide accurate prognoses near the end of life?

  • Study of physician’s estimated prognoses upon hospice referral

    • Only 20% were correct; 63% were over-optimistic

    • More experienced clinicians are more accurate

    • Closer Dr-Pt relationship  less accurate estimate

  • Estimates of nurses aides within one week of death more accurate than those of physician or nurse

Christakis NA, Lamont EB, BMJ 2000; Oxenham et al. Journal of Palliative Medicine 1998

What factors are important in prognosis

What factors are important in prognosis?

  • Disease-specific data

  • Age

  • Functional status

Prognosis in cancer

Prognosis in Cancer

  • Most important predictor is functional status

    • Patients who spend greater than >50% of time in bed or in a chair generally have a prognosis of less than 3 months

  • Standardized scales can be helpful

    • ECOG (Eastern Cooperative Oncology Group)

    • Karnofsky scale

  • Median survival of 3 months correlates with Karnofsky score <40 or ECOG >3.

Weissman D “Determining Prognosis in Advanced Cancer”

The care of patients with life threatening illness


  • ECOG >3, median survival ~3mths

Prognosis by disease process

Prognosis by disease process

Slide courtesy of Caroline Hurd with modifications

Other prognostic resources

Other prognostic resources


    • Older adults without one dominant serious illness

  • Seattle Heart Failure Model (CHF)


  • MELD score for end-stage liver disease

Discussing prognosis

Discussing Prognosis

  • Confirm that patient wants to know and that important people are there if desired

  • Give a range (e.g. weeks to months) and explain limitations

    • Discuss the relationship of function to prognosis

  • Allow silence and respond to emotion

Preserving hope

Preserving Hope

  • Learn about patient’s hopes and fears

    • Allows reframing

  • Respond empathically

  • “Hope for the best, plan for the worst”

    • “Plan A and Plan B”

  • Focus on achievable goals

    • “We can definitely treat your pain . . .”

  • Hope changes over the course of illness

Campbell TC et al, The Cancer Journal, 2010. Back A et al, Mastering Communication with Seriously Ill Patients. Cambridge Univ Press 2009

Case 22

Case #2

  • Your patient’s family is very concerned.

  • They would like her to reconsider diagnostic procedures and chemotherapy.

  • Her daughter asks: “Won’t she live longer if her cancer is treated aggressively?”

Shifting how we care for patients

Life Prolonging






Palliative Care

Shifting how we care for patients


Hospice Care

Life Prolonging Care


Early palliative care

Palliative care likely has a greater benefit if patients are referred early

Randomized control trial of patients with advanced non-small cell lung cancer

PC patients w/ better quality of life, p = 0.03

Fewer PC patients depressed, 16 vs 38%, p = 0.01

PC patients with longer median survival, 11.6 vs 8.9 months, p = 0.02.

Early Palliative Care

Temel JS et al, NEJM 2010

Case 3

Case #3

  • 80 year old retired professor with large stroke

    • History of two prior strokes

    • Treated aggressively with little improvement

    • PE: Somnolent, able to move R hand and foot and mumble a few words

    • Speech pathologist notes severe dysphagia and recommends artificial nutrition

    • What do you do now?

Advanced directives

Two types:

Durable power of attorney for health care

“Living Will”

“Five Wishes” document that includes both


Often not completed with physician input

Cannot anticipate every medical situation

Advanced Directives

Aitkin PV, American Family Physician 1999; Tonelli MR Chest 1996

Benefits of advanced directives

Benefits of Advanced Directives

  • Opportunity to educate patients about their prognosis and illness

  • Guides care reflecting patient's preferences

  • Patients have more control over care

  • Can relieve care giver/surrogate burdens and stress after a patient dies

  • Allows patients to have a voice at times when they cannot speak for themselves

Slide courtesy of Caroline Hurd, MD; Wright JAMA 2008, Detering BMJ 2010

The care of patients with life threatening illness

The care of patients with life threatening illness

Available through UWMC and Harborview Palliative Care services, and at (for a fee)

Polst program

POLST program

  • Goal is to improve communication of wishes for end-of-life care by using standardized form

  • Prospective cohort study:

    • Patients with POLST forms much more likely to have orders about life-sustaining treatments other than CPR, (98.0% vs 16.1%, P < 0.001).

    • Patients with POLST forms indicating that they did not want aggressive measures (including hospital transfer) had those wishes respected.

Hickman SE et al JAGS 2010

Polst availability

POLST availability

  • Washington

  • Montana

  • Idaho (POST form; bracelet available)

  • Developing in Alaska (MOST form)

  • Multiple other states including California and New York (MOLST)

Case 31

The family now knows that the patient would not have wanted artificial nutrition, but is distressed and has a lot of questions:

Won’t he be hungry?

Won’t he die sooner?

Should we reverse his decision?

Case # 3

Artificial nutrition and hydration anh at the end of life

Artificial Nutrition and Hydration (ANH) at the End of Life

  • No evidence that ANH prolongs life for most diagnoses

    • May be helpful in strokes, head/neck cancer, ALS

  • ANH may increase secretions, ascites, edema

  • Tube feeding does not reduce risk of aspiration pneumonia

  • Actively dying patients not thought to experience hunger and thirst

Hallenbeck J, EPERC fast fact #10,; Quill TE et al, Primer of Palliative Care 4th Edition

Case 32

Case #3

  • Family and providers discuss artificial nutrition and hydration in detail

    • Consider a trial of artificial nutrition, but POLST form provides good evidence of his wishes

  • Patient goes home with hospice and dies comfortably with family present

Case 4

Case #4

  • 59 year old woman w/ metastatic ovarian cancer admitted for altered mental status and abdominal pain

    • Has had multiple treatments over 4 years

      • Chemotherapy

      • Radiation therapy

      • Bowel surgery and renal stent

      • Currently on experimental treatment protocol

Case 41

Case #4

  • You interview and examine the patient and discuss her with your senior resident.

  • You write orders and make plans to evaluate her pain and delirium.

  • Your senior resident says, “You forgot to ask about her code status, let’s go back to the room and ask together.”

Case 42

Case # 4

  • What is “Code Status?”

  • What is the best way to ask this patient?

Cardiac resuscitation

Cardiac Resuscitation

  • Became widely used in the 1960’s

  • “Orders not to resuscitate” (now called DNR) introduced in the mid-1970’s

  • Default is treatment

    • Other treatments offered at discretion of provider

  • Most patients do not die of cardiac arrest as the primary process

The care of patients with life threatening illness

Courtesy of Daniel J Brauner MD

The care of patients with life threatening illness

  • Fields ML. The C.P.R. team in a medium-sized hospital.

  • Amer J Nursing. 1966;66:87-90.

Courtesy of Daniel J Brauner MD

Orders not to resuscitate

“Orders Not to Resuscitate”

“ . . .Cardiopulmonary resuscitation is not indicated in certain situations, such as in cases of terminal irreversible illness where death is not unexpected or where prolonged cardiac arrest dictates the futility of resuscitation efforts. Resuscitation in these circumstances may represent a positive violation of an individual’s right to die with dignity. When CPR is considered to be contraindicated for hospital patients, it is appropriate to indicate this in the patient’s progress notes . . “

Standards for Cardiopulmonary Resuscitation (CPR) and Emergency Cardiac Care, JAMA. 1974; 227:p864.

Courtesy of Daniel J Brauner MD

Cardiac resuscitation outcomes

Cardiac Resuscitation Outcomes

  • 18% undergoing in-hospital CPR survived to discharge

  • Between 2 and 8% of patients with cancer survive CPR to hospital discharge

  • In one cohort, only 9% of those receiving prolonged mechanical ventilation were alive without functional disability after one year.

    • Older patients with more comorbidities did worse

Ehlenbach et al NEJM 2009; Ramenofsky and Weissman, “CPR survival in the hospital setting”; Unroe M et al, Ann Intern Med 2010.

Discussing code status

Discussing Code Status

  • Establish patient’s understanding of condition

  • Learn about the patient and their hopes/goals

    • “What are you hoping for?”

    • “What makes life worth living to you?”

  • Make a recommendation based on their goals

  • Reinforce that they can be kept comfortable.

Discussing code status1

Discussing Code Status

  • Don’t use terms like

    • “Do everything”

  • Don’t be mechanistic

    • Better to say “when you are dying” than “if your heart stops.”

    • Describe process in more detail if patient asks

Case 43

Case #4

  • The patient tells you she knows she is dying and hopes to spend time with her family and to be comfortable.

  • She agrees that heroic measures would not be consistent with these wishes.

  • Her pain improves with opioids and she goes home with a POLST form reinforcing her DNR status and a “Five Wishes.”

Case 5

Case #5

  • You are on a Cardiothoracic Surgery rotation and a patient you have been following for two weeks, a 60 yo man with severe CAD, has just died suddenly in the ICU.

  • You and the intern have just finished explaining the events to the family.

  • The intern gets paged and leaves. The patient’s wife starts sobbing uncontrollably.

Responding to grief

Responding to Grief

  • Be present and supportive.

  • Don’t worry about “what to say.”

  • Response to grief does not require a professional—it is a human interaction.

  • Patients expect a human response from their medical team

    • Fine to involve chaplain, social work in addition.

Common grief reactions

Common Grief Reactions

  • Emotional: crying, anger, relief, irritability, no overt emotion.

  • Social: difficulty resuming previous routines

  • Physical: pain (headaches, backaches), hot and cold flashes etc.

  • Thought/behavior: lack of concentration, appetite changes, sleep changes.

  • Spiritual: values, priorities may change.

Courtesy of Carol Kummet LICSW, MTS

Continuing bonds theory of grief

Continuing Bonds Theory of Grief

  • “Death ends a life, not a relationship.”

  • It is healthy to continue to talk about the loved one who has died.

  • People don’t need to “have closure.”

Courtesy of Carol Kummet, LICSW, MTS

William worden s four tasks of grieving

William Worden’s Four Tasks of Grieving

  • Acknowledge the reality of the loss

  • Experience the pain of the loss

    • Quietly witnessing their expression of pain is part of grief counseling

  • Adjust to an environment in which the deceased is missing

    • “Eat, sleep and breathe.”

  • Remember the relationship

Courtesy of Carol Kummet LICSW, MTS

Physicians and grief

Physicians and Grief

  • Be able to acknowledge grief when you experience it; don’t confuse it with burnout or depression.

  • Figure out how you express your grief and do it (crying, writing, talking . . .)

  • Live your life!

  • Learn lessons from each difficult/sad patient encounter.

  • Condolence letters are important to the family member and can also be helpful for us

Why express condolences

Why express condolences?

  • It’s the right thing to do . . .

  • To help loved ones with grieving process, anger

  • The absence of a letter may arouse a family’s disappointment or even suspicion

    • “The veterinarian sent a letter when my dog died . . .”

  • To help in the physician’s own grieving process

  • Kane GC Chest 2007; Bedell SE et al New England Journal of Medicine 2001

    Letter of condolence

    Letter of Condolence

    • Acknowledge the death

      • I am writing to offer my condolences for the death of your wife, Mary.

    • Share a memory about the deceased

      • I really enjoyed taking care of her and hearing her stories about growing up in Alaska.

      • It was clear how much you loved each other.

    • Conclude

      • My thoughts are with you during this difficult time.

    Kane GC Chest 2007



    • Thoughtful conversations eliciting patients’ hopes, fears and values are essential in end-of-life decision-making

    • Palliative care probably more helpful when started earlier

    • Advanced directives are useful tools

      • POLST and “Five Wishes”

    • You will witness grief; patients appreciate compassion and expressions of condolence.



    • Palliative Care services

      • UWMC, Harborview, VA, many other hospitals

    • Social work consult

      • Hospice referral

      • Grief resources


      • Peer-reviewed “Fast Facts” in Palliative Care

        • Communication skills and symptom management




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