2017 curtis r. holzgang, m.d., macp visiting scholar/media/files... · (interview with a pediatric...

What They Don’t Say: Nonverbal Patient Behavior

and its Role in Medical Decision Making

Presenter:

Ralf J. Jox, M.D., PhD

Medical Grand Rounds

Oct 17, 2017 8-9 am Q&A 9-9:30 am Providence St. Vincent Medical Center

Oct 18, 2017 8-9 am Q&A 9-9:30 am

Providence Portland Medical Center

Open Forum Oct 18, 2017 4-5 pm

Providence Milwaukie Hospital

Donor contributions to Providence St. Vincent Medical Foundation make this lectureship possible.

2017 Curtis R. Holzgang, M.D., MACP Visiting Scholar

This lectureship honors retired director of Critical Care Medicine, Dr. Curtis Holzgang, who was an inspiration in ethics education, especially for internal medicine residents working in critical care.

Sponsored by Providence Center for Health Care Ethics

The Curtis R. Holzgang, M.D., MACP Visiting Scholar Sponsored by

Providence Center for Health Care Ethics

Established in 2002, the Curtis R. Holzgang, M.D., MACP Visiting Scholar lectureship honors an exemplary role model in medical ethics. The Visiting Scholar lectureship is a program of Providence Center for Health Care Ethics named for Dr. Holzgang, emeritus faculty, Internal Medicine Residency at Providence St. Vincent Medical Center. During his tenure as director of critical care medicine, Dr. Holzgang was an inspiration in ethics education, especially for internal medicine residents and nurses working in critical care. He is a master teacher who instructs by example and instills enthusiasm for

bedside rounds and a deep appreciation for the caregiver-patient relationship. The Oregon Chapter of the ACP recognized Dr. Holzgang with the 2010 Laureate Award for his devotion to, and modeling of, the highest ideals of doctoring. Dr. Holzgang was instrumental in establishing Providence Center for Health Care Ethics in 2000. The center is a recognized leader in advancing the role and value of ethics in health care. It contributes to excellence by providing ethics education to all health disciplines, consultation across the continuum of care, and research and scholarship on key ethical issues.

www.providence.org/ethics

This lectureship is made possible by gifts from generous donors to the Providence St. Vincent Medical Foundation Visiting Scholar Fund.

Curtis R. Holzgang, M.D., MACP

Ralf J. Jox, M.D., PhD Ralf J. Jox, M.D., PhD, is Associate Professor of Geriatric Palliative Care at Lausanne University Hospital, Switzerland, and Assistant Professor for Medical Ethics at the University of Munich, Germany. His research activities focus on end-of-life decisions, geriatrics ethics, neuroethics, and clinical ethics consultation. He studied medicine at the Universities of Freiburg, Munich and Harvard Medical School. Dr. Jox is also a trained philosopher and completed a Master in medical ethics and law at King’s College London. He holds board certificates in neurology and palliative care and is a certified clinical ethicist.

What They Don’t Say: Nonverbal Patient Behavior and its Role in Medical Decision Making

Description Patients who lack decision-making capacity may display nonverbal behavior that can complicate the medical decision making process undertaken by the treating team and a surrogate decision maker. This is particularly the case for patients with neuropsychiatric disorders such as dementia, who may appear to refuse eating or nursing care by their gestures or may appear to express a will to live. Such behavior, however, is not only difficult to interpret, but also difficult to reconcile with standard ethical and legal criteria as well as prior treatment direction contained in advance directives and other forms of advance care planning. This presentation will summarize existing empirical evidence and discuss possible ethical approaches to this problem. Learning Objectives

• Identify different kinds of nonverbal behavior for patients who lack decision-making capacity, especially in the setting of dementia

• Understand possible motivations and messages contained within nonverbal patient behavior • Explore how nonverbal patient behavior should be considered in the medical decision-making process

1,001 Ethical Issues with Voluntarily Stopping of Eating and Drinking (VSED)

Description Voluntarily stopping of eating and drinking (VSED) has been increasingly advocated as a more humane and less ethically problematic alternative to assisted suicide. Additionally, some patients and groups are advocating for including VSED in advance care planning documentation which may expand the use of advance directives beyond widely accepted standards. This presentation will challenge these views by demonstrating that some forms of professional support for VSED are equivalent to assisted suicide. Learning Objectives

• Identify the clinical situations where voluntarily stopping of eating and drinking (VSED) may occur and how clinicians may be asked to respond

• Understand the difference between VSED and assisted suicide • Explore where clinical participation in VSED may be analogous to a form of physician assisted suicide and may

not be appropriate.

1

Outline

1. Societal relevance

2. Clinical phenomenon

3. Interpretation

4. Ethical evaluation

5. Conflict with advance directive

Jox - Medical Grand Rounds 10/10/2017 3

Medical Grand Rounds

Providence Health & Services

Portland, OR, Oct 17-18, 2017

What They Don’t Say:

Nonverbal Patient Behavior and

its Role in Medical Decision Making

Ralf J. Jox

Institute of Ethics, History and Theory of Medicine

University of Munich, GER

Geriatric Palliative Care, Lausanne University Hospital, CH

Example

Mrs. D., 79 y.o. former ballet dancer

Found lying in apartment hospital

Neighbor: for 2 years problems with

memory and spatial orientation, falls

Severe dementia syndrome, rigidity,

hallucinations, cachexia, not communicative

(presumed Lewy Body Disease)

Catabolic metabolic state, dehydration

She “refuses” nutrition (presses lips

together, turns away her head)

No advance directive, no proxies

Photo: C. Kolb

PEG tube? Jox RJ, Marckmann G (2011) Ethik Med

Jox - Medical Grand Rounds 10/10/2017 # 2

2

Ethical Relevance

Capacity to

decide for

yourself

Existential

weight of the

decisions

t Course of life-limiting diseases

Rise of guardianship

cases per year

(Germany)

Jox - Medical Grand Rounds

Guardianship cases 1995-2009 (official statistics)

10/10/2017 6

Decisional incapacity

40% of acutely hospitalized patients

Raymont V et al, Lancet 2004

54% of all patients for whom end-of-life decisions are

made Bosshard G. et al. Swiss Med Wkly 2016

70% of older adults for whom treatment decisions

are required

Silveira MJ et al, N Engl J Med 2010

95% of critically ill patients

Smedira NG et al, N Engl J Med 1990

Prendergast TJ et al, Am J Respir Crit Care Med 1998


Societal Divide

Competent

(Capacity

Incompetent

(Incapacity)

Right to self-determination Infringements on right

to self-determination

permissible


3

Outline



3. Interpretation




Dementia

Prevalence in affluent

countries declining Langa KM et al. JAMA 2017

Prevalence of chronic

organ (and brain)

diseases rising

Decisions:

Recurrent crises Hospitalization? ICU? Life support?

Reduced oral intake PEG tube?

Intercurrent diseases (z.B. cancer) Therapy?


Behavior,

potentially willful

Classification

Verbal Behavior Ph ical phenomena


4

Behavior,

potentially willful

Nonverbal behavior

Non-intentional behavior

Positive

expression

Negative

expression

Classification

Verbal behavior P ysical Phenomena

Not tied to a specific situation, not directed at a specific object, without a specific movement


Example

Concerning a neonate with severe acquired

neurodevelopmental impairment, septicemia, ICU:

“This is a statement that you hear time and time again by

parents: ‘My child has to decide this.’ (…) I think that parents

have to develop a feeling for the right time, the feeling: ‘Now,

my child does not want to go on any more; my child does not

have any more the force to live (…) The spirit of life is gone.’

This may be very subjective, emotional and hard to prove, but

you hear that very often. Also: ‘He still wants to live. Now that

he is at home and doing well, this means he wants to keep on

living.’ ” (Interview with a pediatric palliative care physician)


Physical phenomena

Overcoming crisis (e.g., life-threatening multi-

organ failure) → “Will to live”?

Failure of immune system (“Patient gives up”)

Accumulation of complications and crises

Reflexes / involuntary motor signs

…


5

Aversive behavior

Refusal of oral nutrition: Stopping of eating and

drinking, not opening the mouth, not swallowing, turning

away the head, shoving off the plate…

Refusal of parenteral nutrition: Manipulation or pulling

the tube, closing a syringe driver, pulling the plug…

Resistance to nursing:

Not cooperating, fighting off with hands and feet…

Refusal of medication:

Spitting tablets, pulling venous cannula…


Behavior,

potentially willful

Nonverbal behavior

Intentional behavior Non-intentional behavior

Positive

expression

Negative

expression Aversive Appetitive

Classification

Verbal behavior P ysical Phenomena

Tied to a specific situation, directed at a specific object, With a specific movement (“act”)



Non-intentional behavior

Positive expression (of wellbeing?):

Smiling, singing, whistling, dancing…

Relaxed muscle tone or facial mimics…

Slow pulse, low blood pressure… (?)

Negative expression (of malaise):

Moaning, groaning, weeping, crying…

Tense muscle tone, grimacing…

Fast pulse, high blood pressure, sweating… (?)


6

Involuntary motor

behavior Ruling out involuntary motor behavior:

Plantar reflex Grasp reflex

Tremor Pathological crying/laughing

Pseudobulbar affect + epileptic seizures, dystonia, tics…


Outline



3. Interpretation




Appetitive behavior

Pursuit of closeness:

Taking/gripping another one‘s hand, calling others,

hugging, embracing others…

Pursuit of nutrition:

Reaching for food, swallowing avidly…

Other forms:

Searching for objects, holding on to objects/toys…

Patient does or does not want something, but:

1. What is this something?

2. What is the normative status of this wanting?


7

ursing home

ital admission due to a fall and femur fra

surgery and mobilization she was transferred

to the nursing home

behaves as usual, but eats and drinks le

Case example

Mary F., 77 y.o., two left-sided strokes, vascular

dementia, arterial hypertension, osteoporosis, lives in

a n Low-dose analgesic

Hosp After 3 days she resumes eating

and drinking as before

After After 2 weeks she has regained 5

cture

back

Mary

kilograms and has the quality of life

of before ss,

loses weight, withdraws from social activities

Response? PEG tube? Letting die?


Assessment

Aversive eating behavior:

Food does not taste well?

Pathologies in oral cavity (toothache,

mucositis)?

Gastrointestinal pathology (loss of

appetite, nausea, constipation)?

Depression?

Rejection of the helping person?

Wish to die?

Use validated assessment instruments

(e.g. Aversive Feeding Behavior Inventory)


Cerebral pathologies

Disturbance of perception (hallucinations…)?

Disturbance of thinking (delusions…)?

Disturbance of action drive (mutism…)?

Disturbance of action planning (apraxia…)?

Disturbance of speech (aphasia)?

Disturbance of memory?

Disturbance of social interaction?


8

Outline



3. Interpretation




Interpretation

by relatives

Case vignette: Frequent laughing and playing, signs of joy

“It is reported that he shows joy and zest for life, he laughs. For

me these are strong indicators that he still, well, even despite

his severe condition he is currently in, still cherishes life.”

(Professional guardian B14 – would consent)

“Well, one day he is happy and the other day he is depressed,

so you cannot really say, you cannot really maintain everything

just because of a laughter or good mood one day.”

(Relative A16 – would not consent)

Jox RJ et al. Int J Geriatr Psych 2012


Interpretation

by relatives

Case vignette: Resistance when giving food

“I would not consent to the placement of a feeding tube (…) if

he turns away his head, when food comes, he is maybe not

any more interested in life (…) I have witnessed this myself

with a friend.”

(Relative A8 – would not consent)

“If there is no other way, then the physicians have to place a

feeding tube (…) because, ultimately, you cannot look inside

a person. If he turns away his head, maybe he does not

mean it like that (…)”

(Relative A1 – would consent)

Jox RJ et al. Int J Geriatr Psych 2012


9

Currently expressed will (competent patient)

Anticipatorily expressed will (“living will”)

Substituted judgment (presumed will)

Best interests (wellbeing)

Words & Concepts

Nonverbal

behavior:

If not present

“assent”?

“natural will”?

If not present

If not possible


4 Theses

1. We lack a precise terminology and concept of

nonverbal expressions of will of incapacitated patients.

2. In practice this nonverbal behavior has a huge and often

decisive impact of treatment and care decision making.

3. Each behavior is an indispensable and important indicator

of patient wellbeing, but only some behavior is actually

an ex pression of will.

4. These expressions gain ethical weight according to

four s p e c i f i c criteria (4 C’s ).


Ethical question

Which role should the nonverbal behavior of

patients without decision-making capacity

play in treatment decision making?


10

Relevance in practice

Decisional basis for family members of patients with disorders of

consciousness:

Jox RJ et al. Arch Phys Med Rehab 2015



Experimental vignette study with legal representatives of

persons with dementia:

Current behavior

Prior statements

Nurses' view

Physician's view

Family's view

Life attitude

0 0.1 0.2 0.3 0.4 0.5 0.6 0.7 0.8

Relative decisional weight (0-1)

Jox RJ et al. (2012) Int J Geriatr Psychiatr


Words & Concepts

Decision-making capacity

Legal boundary Verbal expression

“Natural will” Intentional nonverbal

behavior

Non-intentional nonverbal

behavior


11

Behavior,

potentially willful

Nonverbal behavior

Intentional behavior Non-intentional behavior

Positive

expression

Negative

expression Aversive Appetitive

Wellbeing

Verbal behavior Physical Phenomena

Tied to a specific situation, directed at a specific object, With a specific movement (“act“)


Indications for patient wellbeing



Kuehlmeyer K et al. J Am´Geriatr Soc 2015



Kuehlmeyer K et al. J Am Geriatr Soc 2015;63:2544-9

Survey among 131 nurses in 12 aged care facilities of

the greater Munich area, Germany

93% evaluate the nonverbal behavior of residents with

advanced dementia as an important factor for decisions

about nutrition

Nonverbal behavior was interpreted differently and even

contradictorily


12

A German Case

Walter Jens, the “Orator of the Republic”

1974 Walter Jens, suffering from

dementia (with his wife Inge)

2009


Outline



3. Interpretation




Ethical weight

4 criteria that increase the ethical weight of nonverbal

behavior (4 C‘s):

1. Consensus in th

involved (family caregivers, professionals)

2. Constant behavior over time

3. Coherent with other behavior of the person

4. Consistent w ith the person’s biography


the interpretation of all caregivers

13

Empirical study

N=735 Germans

(professional

and family

caregivers)

Arguments in

favor of

respecting AD

Schoene-Seifert B et al. JAMDA 2016


Ethical evaluation

1. An ethical balancing exercise is necessary:

Advance directive

→ AD valid?

→ AD meaningful/concrete?

→ AD well informed?

→ AD applicable?

Current behavior

→ Consensus in interpretation

→ Constant over time?

→ Coherent with behavior?

→ Consistent with biography?

2. Has the person been prioritizing critical or experiential

interest in her life?

3. Has the person autonomously positioned herself toward

this conflict in the advance directive (“meta-directive”)?


Legal evaluation

Constellation in practice relative rare:

A) AD refusing treatment (often) ↔ behavior for treatment (rare)

B) Behavior against treatment (often) ↔ AD for treatment (rare)

No revocation of the AD, since capacity necessary:

→ Revocation = new AD of the same scope, irrespective of content

→ Cannot be conceptualized as changing "ones mind"

Applicability of the AD:

→ Implicit assumptions on future life situation and wellbeing

→ If these assumptions are not realized, the AD is not applicable

Jox RJ in: Borasio/Heßler/Jox/Meier 2011 Jox RJ in: Biller-Andorno/Brauer/Lack 2013


14

Thank you for

the attention! Jox - Medical Grand Rounds ralf.jox@m1e0/1d0/2.0l1m7 u.d4e2

Dementia hermeneutics

The story or the narrative of a pers on’s

life is what really gives rise to what is

behind the person’s behavior.

I don’t think that there is a more

valuable way of spending time than to

honor someone’s humanity and wishes

and dignity and find out what they are

and what they want. Steven Sabat,

Georgetown University


Practical support

N=735 Germans

(professional

and family

caregivers)

Decisions in

different case

variations

Schoene-Seifert B et al. JAMDA 2016


2017 curtis r. holzgang, m.d., macp visiting scholar/media/files... · (interview with a pediatric...

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