Improving end-of-life care in the long term care setting

1
Improving end-of-life care in the long term care
setting

• David Casarett MD MA
• Division of Geriatrics
• Center for Bioethics
• University of Pennsylvania

2
Mr. Palmer

• Mr. Palmer is an 84 year old man with advanced
  dementia (MMSE score10), congestive heart
  failure, diabetes, and prostate cancer.
• He currently lives in a skilled care facility,
  where he is dependent on others for most
  activities of daily living.
• He has had 2 hospitalizations in the past 6
  months one for a heart failure exacerbation and
  one for presumed aspiration pneumonia.
• He has lost 10 lbs. in the past 6 months and is
  only eating 50 of meals, despite an intensive
  feeding program.

3
Mr. Palmer

• Long term care resident with several serious
  chronic illnesses
• Is highly likely to experience events in the near
  future that will
• Compromise his health
• Result in death
• Result in a significant decline in function

4
Decisions that need to be made

• Advance directive preferences
• DNR
• Transfer/hospitalization
• Artificial Nutrition and Hydration

5
Usual approaches

• Medical decisions (without input)
• Your father is losing weight, we need to put a
  feeding tube in
• Leave decision up to resident/family
• Your father is losing weight, what do you want
  us to do?
• Your father is very sick, do you want us to do
  everything to keep him alive?

6
Hazards of the usual approach

• Decisions that are not consistent with
  resident/family goals and preferences
• Too much treatment
• Too little treatment
• Dissatisfaction with care
• Unpleasant memories of the residents last months
  of life

7
An approach to decision-making discussions near
the end of life

1. Identify the decision-maker
2. Assess prognosis
3. Define goals
4. Clarify preferences
5. Determine a plan
6. Reevaluate and update
7. One example Decisions about ANH

8
Mr. Palmer

• An 84 year old man with advanced dementia (MMSE
  score10), congestive heart failure, diabetes,
  and prostate cancer.
• Currently lives in a skilled care facility, where
  he is dependent on others for most activities of
  daily living.
• 2 hospitalizations in the past 6 months.
• He has lost 10 lbs. in the past 6 months and is
  only eating 50 of meals.
• Need for a decision about ANH (and other
  treatment options).

9
Decision-making Who is the decision-maker?

• Does the resident have adequate decision-making
  capacity?
• Is there someone who can share decision-making?
• How should a family member make decisions on the
  residents behalf?

10
Does this patient have decision-making capacity?

• Mr. Palmer is an 84 year old man with advanced
  dementia (MMSE score10), congestive heart
  failure, diabetes, and prostate cancer.
• He currently lives in a skilled care facility,
  where he is dependent on others for most
  activities of daily living.
• Can he make decisions about a feeding tube?

11
Decision-making capacity and competence

• Competence
• Decided by psychiatrist (usually)
• Decision validated in court
• Global implications
• Decision-making capacity
• Decided in clinical setting
• Decided by clinical team
• Decision-specific

12
Who can assessDecision-making capacity?
Competence?
Capacity Physicians Nurses Social
workers Chaplains Speech therapists
Competence Psychiatrists
13
The theory of informed consent and
decision-making capacity

• Informed consent is justified by a patients
  right to autonomy, and our obligation to respect
  autonomy.
• Informed consent requires
• Adequate disclosure of relevant information
• Freedom from outside influences in making a
  decision
• Decision-making capacity Ability to learn and
  use information to make that decision
• Respect autonomy by honoring the decision of a
  patient with capacity
• Respect autonomy by turning to a surrogate when a
  patient lacks capacity

14
The skills of assessmentCHF vs. capacity

• Congestive heart failure signs and symptoms
• Elevated jugular venous pressure
• Dyspnea, orthopnea
• Rales
• S3
• Peripheral edema

• Decision-making capacity signs and symptoms
• ?

15
Assessing capacity pathophysiology

• Decision-making capacity requires
• Understanding
• Appreciation
• Reasoning
• Ability to express a choice
• Assessed by interview

• Heart function requires
• Clearing blood from venous circulation
• Delivery of blood to vital organs
• Assessed by physical examination

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Decision-making capacity

• Mr. Palmer is an 84 year old man with advanced
  dementia (MMSE score10), congestive heart
  failure, diabetes, and prostate cancer.
• He is able to understand that he has several
  serious illnesses and seems to appreciate that
  these illnesses may result in his death.
• He understands the risks and potential benefits
  of a feeding tube.
• But he cannot weigh those risks and potential
  benefits to reach a decision

17
Shared decision-making

• More common in
• Older patients
• Women
• Married patients
• African-American patients
• Hispanic patients
• Patients with cognitive impairment

18
Who is involved in end of life discussions?
RN observation
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Mr. Palmer

• Mr. Palmers daughter visits frequently, often
  bringing his grandchildren. She often
  participates in decisions and steps in to make
  decisions on his behalf when he is unable to
  (e.g. decisions about hospitalization)

20
When the resident cant make decisionsSurrogate
decision-making standards

• Pure autonomy
• What a patient wants
• Uses advance directives
• Substituted judgment
• What a patient would have wanted
• Uses previous statements
• Best interests
• What would be best for a patient

21
Mr. Palmer

• 84 year old man with advanced dementia (MMSE
  score10), congestive heart failure, diabetes,
  and prostate cancer.
• Able to participate in decisions, but lacks full
  decision-making capacity.
• Decisions about a feeding tube would be made
  jointly with daughter.

22
Prognosis Challenges of recognizing the end of
life

• 84 year old man with advanced dementia (MMSE
  score10), congestive heart failure, diabetes,
  and prostate cancer.
• He currently lives in a skilled care facility,
  where he is dependent on others for most
  activities of daily living.
• He has had 2 hospitalizations in the past 6
  months one for a heart failure exacerbation and
  one for presumed aspiration pneumonia.

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Why is prognosis information valuable?

• Ability to make informed decisions about feeding
  tubes and other treatments
• Guidance for practical decisions (financial)
• Reconciliation/chance to say goodbye
• Alleviation of stress that not knowing incurs
• Reluctance of families to discuss plans when
  prognosis is unknown

24
Do patients want to discuss prognosis?

• 1982 data 96 of Americans wanted to know if
  they had cancer and 85 reported wanting to know
  if prognosis lt1 year
• Annas, G. NEJM 330223-225
• 44 of bereaved family members of elderly
  deceased cited improved communication as very
  important.
• Hanson, L. JAGS 1997451339-44.
• 85 of cancer patients stated that they wanted
  all information, good and bad.
• Cassileth, B Ann Intern Med 1980 92832-836

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How accurate are clinicians in prognostication?
Study Median Estimate Median Actual Estimate/ Actual
Parkes, 1972 4.5 2.0 1.8
Heyse-Moore, 1987 8 2 4
Forster, 1988 7 3.5 2
Christakis,2000 N/A N/A 5.3
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Functional status predictive value

• COPD New dependency in 2 ADLs in 2 years
  (Connors 1996)
• Dementia Inability to ambulate (Luchins, 1997)
• ECOG/Karnofsky performance status (Mor 1984
  Conill 1990 Sloan 2001)

27
Trajectories of functional decline
CHF/COPD
Cancer
Dementia
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Checkered flags-General

• Would I be surprised if this patient were to die
  in 6 months?
• Good idea
• Widely used
• Prognostic value unclear

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Cancer

• Cancer with metastatic disease brain, pleura,
  pericardium, carcinomatous meningitis (Vigano,
  2000)
• Malignant bowel obstruction (Vigano, 2000)
• Cancer with hypercalcemia (not multiple
  myeloma)(Vigano, 2000)
• Symptoms Anorexia, dyspnea, dysphagia (Maltoni,
  1997)

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Non-cancer diagnoses

• Dementia
• Few/no meaningful words (Luchins, 1997)
• Acute hospitalization (Morrison, 2000)
• CHF
• Dyspnea at rest (Pfeffer, 1992)
• Hyponatrema and renal insufficiency attributable
  to decreased cardiac output (Alla, 2000)
• COPD
• Decline in FEV1gt40cc/year OR FEV1lt1.00 (Traver,
  1979)
• ICU admission for exacerbation (Seneff, 1995)
• Loss of 2 ADLS/past year (Connors, 1996)
• Chronic hypercapnea (Costello, 1997)
• Cirrhosis with any renal insufficiency

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Prognosis Mr. Palmer

• An 84 year old man with advanced dementia (MMSE
  score10), congestive heart failure, diabetes,
  and prostate cancer.
• He currently lives in a skilled care facility,
  where he is dependent on others for most
  activities of daily living.
• He has had 2 hospitalizations in the past 6
  months one for a heart failure exacerbation and
  one for presumed aspiration pneumonia.
• Not imminently dying, but limited prognosis (lt 1
  year)

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Goals for care whats important?

• Identity
• Preferences
• Locus of control
• Values

33
Why discuss goals?

• SUPPORT study, SUPPORT investigators 1995
• 47 of physicians knew when their patients wanted
  to avoid CPR
• 40 of patient/family-physician pairs discussed
  CPR
• Medicare resource use study, Teno 2002
• 20 of seriously ill Medicare patients said their
  care was too aggressive

34
The Interrelationshipof Goals

• Historical sequencing
• Multiple goals often apply simultaneously
• Goals are often contradictory
• Certain goals may take priority over others

35
Common goals (not mutually exclusive)

• Safety
• Comfort
• Prolong life
• Sense of closure
• Strengthen interpersonal relationships
• Improve/maintain function

36
Curative / Life-prolonging Therapy
Presentation
Death
Relieve Suffering (Hospice)
Relieve Suffering (Palliative Care)
37
Informed consent and goals for care

• Informed consent requires
• Adequate information about
• The proposed treatment option
• Its risks and potential benefits
• Medically appropriate alternatives
• Decision-making capacity
• Absence of inappropriate influence
• Inducement
• Coercion

Hospice Palliative care
38
6-Step Protocol to Negotiate Goals of Care

1. Create the right setting
2. Determine what the patient and family know
3. Ask how much they want to know and discuss with
   you
4. Explore expectations and hopes
5. Suggest realistic goals
6. Respond empathetically

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Mr. Palmer

• An informal meeting was held with the Nurse
  Practitioner on the unit, Mr. Palmer, and his
  daughter.
• The discussion focused on Mr. Palmers goals for
  care, negotiated between the NP, Mr. Palmer, and
  his daughter.
• Central goals were
• To stay as comfortable as possible
• To spend time with family
• To maintain function and independence as much as
  possible

40
Defining preferences general principles

• Begin with goals
• Focus on goals
• Encourage consistency
• With goals
• With other preferences

41
Mr. Palmer defining preferences for care

• CPR
• ICU admission
• IV antibiotics
• Hospice
• Hospital transfer
• Artificial Nutrition and Hydration

42
Preferences about Artificial Nutrition and
Hydration (ANH)

• Difficult because of
• Strong beliefs
• Families
• Staff
• Regulatory pressures
• Reimbursement incentives
• Fears about starving residents

43
ANH Medical background

• Feeding administered by
• Gastrostomy/Jejunostomy tube
• Placed through abdominal wall
• Endoscopic/surgical (short hospital stay)
• Parenteral line
• Central line
• Long-term peripheral line
• Both require medical/surgical procedure for
  placement

44
Goals of ANH Mr. Palmers goals

• To improve survival
• To promote better nutrition
• To promote weight gain/prevent weight loss
• To prevent aspiration pneumonia
• To promote wound healing

• To stay as comfortable as possible
• To spend time with family
• To maintain function and independence as much as
  possible

45
Does ANH work?

• Yes
• PVS (survival)
• Selected rare GI conditions (survival)
• Maybe
• Post-surgery (nutrition, wound healing)
• Acute conditions (intensive care unit/burn unit)
• Probably not
• Dementia (any indication)

46
Will ANH help to achieve Mr. Palmers goals?

• Goals
• Increased comfort?
• Time with family?
• Maintain function and independence?
• Probably not

47
Risks of ANH? (selected examples)

• Procedural risks (surgery)
• Self-removal (bleeding, peritonitis)
• Nausea, bloating, abdominal pain, diarrhea
• Aspiration pneumonia
• In patients with dementia Need for physical
  restraints
• Delirium
• Pressure ulcers
• Weakness/debility

48
History of ANH Law and ethics

• Surgical/technical procedure with uncertain
  benefits, significant risks
• Decisions should be made by patients/families
  using the same approach that is applied to other
  medical decisions
• Risks/Burdens
• Potential benefits
• Patient preferences
• Evidence in
• Past case law (Brophy, Quinlan, Cruzan)
• Incorporation into the practice of clinical
  bioethics

49
ANH preferences

• Decisions about ANH should be made in the same
  way, based on the same information, as decisions
  about other treatment are.

50
Goals and preferences Cultural Differences

• Who gets the information?
• How to talk about information?
• Who makes decisions?
• Ask the patient
• Consider a family meeting

51
Mr. Palmer

• A family meeting was held, which included Mr.
  Palmers daughter, the interdisciplinary team and
  the attending physician. The meeting was held in
  a room that could accommodate Mr. Palmer as well,
  so he could be present.

52
Family meeting

• The group discussed
• Mr. Palmers goals
• Mr. Palmers preferences as far as they could be
  determined
• Mr. Palmers daughters wishes based on what she
  knew of her father and his goals
• The risks and potential benefits of a feeding tube

53
Mr. Palmer

• They decide that
• A feeding tube offers a balance of risks and
  potential benefits that Mr. Palmer does not want
• A feeding tube would not be consistent with Mr.
  Palmers goals
• He would not want a feeding tube if he were able
  to make the decision on his own

54
Mr. Palmer

• Care plan
• Continued intensive hand feeding
• Dietary supplements
• Understanding that continued weight loss is
  expected and inevitable
• Focus on Mr. Palmers goals with plan of comfort
  care.

55
Approach to decision-making near the end of life

• Identify the decision-maker
• Assess prognosis
• Define goals
• Clarify preferences
• Determine a plan
• Reevaluate and update
• One example Decisions about ANH