Dignity and Death: Applying the practice of mindfulness to improve end of life care Mitchell M. Levy MD, FCCM Professor of Medicine Chief, Division of Pulmonary, Sleep, and Critical Care Warren Alpert Medical School of Brown University Director, Medical Intensive Care Unit Rhode 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:

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: )

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 – Rarely  Explore reasons for preferences  Ask 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 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):

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):

Communication During EOL Discussions Strategies for Improvement

Finding a place of spaciousness as 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