Dignity and Death: Applying the practice of mindfulness

to improve end of life care

Mitchell M. Levy MD, FCCMProfessor of Medicine

Chief, Division of Pulmonary, Sleep, and Critical CareWarren Alpert Medical School of Brown University

Director, Medical Intensive Care UnitRhode Island Hospital

Providence, RI

Dignity• Feel good about who we are

– Pride in ourselves

• A sense of being worthy

• Inherent in the human condition

• Undermined by illness– Helplessness– Being dependent– Isolation and abandonment

State of dying in our culture

• Fear of death – Cultural avoidance and hiding of the dying

process– Embarrassment of illness and death

• The healthcare environment– A culture of speed and chaos

State of dying in our culture

• Lack of caregiver training– Dealing with heightened emotion– Dealing with cultural differences– Dealing with family conflicts

• Listening skills of caregivers• This leads to:

– Avoidance behavior– Abandonment of patients and families during the dying

process

Does it Really Matter?

One in Five Deaths in the U.S. Occur in the ICU

Angus, Crit Care

Med 2004; 32:638

Symptoms of Anxiety and Depression in family members of ICU patients

• 43 ICUs in France; 623 patients, 920 family members

• Hospital Anxiety and depression scale

• Prevalence:– Anxiety: 69%– Depression; 35.4%

• Symptoms:– Family members: 72% – Spouses: 84%

• Factors:– Absence of regular

MD meetings– Absence of proper

space– Contradictory

information

Pochard et al CCM 2001;29:1893-1897

Families Looking Back: One year after EOL Discussions

• 48 family members, one per case; 1 yr after EOL discussion

• 46% perceived conflict– With medical staff– Communication problems

• Lessen Burden:– Previous discussion with loved one (63%)– Presence of clergy (48%)

• Better space for family discussions (27%)• Preferred source for Information: Attending MD (48%)

(Abbott et al CCM 2001;29:197-201)

Why are patients and families frustrated with

our Communication Skills?

Quality of Communication About DNR Orders & Advance Directives

• In audiotapes of 87 patient-physician discussions, physicians–Spend 73% of the time talking–Initiate discussion about patients’ values or goals in < 33% of the time

–RarelyExplore reasons for preferencesAsk patients to define quality of life

Tulsky, Ann Int Med 1998

Family Satisfaction with Family Conferences

• Taped family conferences (n = 51)• Mean time: 32 min (7-74)• Family: 29%• Clinicians: 71%• Increased proportion of family speech:

– Increased family satisfaction physician communication

• Increased family speech: – Decreased family ratings of conflict with physicians

• No association between duration and family satisfaction

McDonagh JR.et al CCM. 2004;32(7):1484-8,

Number of Empathic Statements in Family Conferences

Histogram depicting Frequency of Empathic Statements by Conference

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Selph, J Gen Intern Med, 2008; 23:1311

What Can Caregivers Do?

• Appreciate compassion and impermanence as the ground for accompanying others at the end of life

• Make a personal relationship with death• Learn to work with the discomfort that arises

around uncertainty and death• Experience listening and presencing as tools

for accompanying others at the end of life

Impermanence and Change

• Willing to be with Things as They Are• We are working with the fear of change

and death. – That everything changes is the basic truth

for our existence. – No one can deny this truth

• We’re born, We get Old, We get sick, We Die

Feeling Helpless, NOT Hopeless

• We can accept feeling helpless.– Hope that we can hold onto something forever,

and – Fear that things will slip from our fingers, will not

change these basic truths.– Life is transient, changing, and impermanent

• This is the experience of grief

But:Through understanding the

inevitability of change and loss

We can maintain hopefulness and joy of appreciating the time we have left without avoiding

the fear of dying.

Making a Personal Relationship with Death

• Just because we see death all the time we are not necessarily comfortable with it

• Death, grief, and the prospect of loss raise the same anxiety and discomfort for caregivers as for patients and their families

• As clinicians we are not trained to feel comfortable with death.

Making a Personal Relationship with Death

• When confronted directly with the emotional intensity that surrounds the dying process, most clinicians recoil.

• The feeling of desolation and hopelessness that death evokes, makes most caregivers physically and emotionally uncomfortable

• We can, and should, contemplate death in our lives, as caregivers

Working with uncertainty

• Do Clinicians know anything with certainty?– Prognosis– Cause– Timing

• Resort to avoidance because of uncertainty

Working with uncertainty

• Can we learn –to be comfortable–To Rest–To Dwell

• In Uncertainty

Mindfulness and Communication

Mindfulness

• Quality of awareness – Pay attention in a particular manner– Focus on the present, non-judgemental

• Lower one’s reactivity to challenging experiences

• Increasing ability to notice, observe, experience body sensations (even if unpleasant)

Mindfulness

• Acting with awareness and attention–Being genuine

• Focus on experience–Not labels or judgments

Mindfulness and Communication During End of Life Discussions

• Taming the mind– Overcoming distraction– Learning to be present

• Listening– Being comfortable with silence

Mindfulness and Communication During End of Life Discussions

• Instead of discomfort and avoidance behavior– We can learn to be comfortable and

present with patient• During grief• During heightened emotion• In the face of uncertainty

Let’s Try it

Mindfulness, Burnout and Empathy

• Primary care physicians– N = 70, before and after trial– Self selected, minimal remuneration

• Intervention:– 8 weekly 2.5 hr sessions– 1 all-day session– Maintenance phase: 10 monthly 2.5 hr sessions– Narrative and appreciative inquiry exercises– Listening exercises– Discussion

Krasner et al. JAMA 2009;302(12):1284-1293

Mindfulness, Burnout and Empathy

• Maslach Burnout inventory/Jefferson Scale of physician empathy

• Results (all significant):– Improved measures of burnout

• Emotional exhaustion• Depersonalization• Personal accomplishment• Empathy

– Mindfulness improvement associated with:• Empathy• Improved mood disturbance• Conscientiousness• Emotional stability Krasner et al. JAMA 2009;302(12):1284-1293

Communication During EOL Discussions

Strategies for Improvement

Finding a place of spaciousnessas a Caregiver and a Patient

–It’s trustworthy to feel grief, pain, discomfort• It’s not necessarily bad to feel it

–Rather than being overwhelmed, we can just stay with it and feel it

–There’s nothing to fix

Improving Communication skills:Being genuine and present

• Learning to be genuine– Simple, open presence

• Learning to listen– Without distraction

• Discover empathy and true compassion– Not sympathy

• Silence as a therapeutic tool

Mindful, Compassionate End of Life Care

• Caregiver does not avoid the discomfort and uncertainty of dealing with death

• Talk honestly with patients and families• Offers advice to help a family feel good about

a difficult decision• Patient and family feel cared for and

respected during the dying process