10/26/2015
Being With Suffering
Bretton Newman, MD
Medical Director Rocky Mountain Hospice,
Hospice & Palliative Medicine Board Certified
Losses
• 32 yo divorced male with end‐stage multiple sclerosis • Electric wheelchair bound, medically disabled
• Four children, now living with mom
• Hospitalized with urosepsis, suprapubic catheter
• Unable to remain alone at home with caregivers, admitted to nursing facility
• His mom tells me: “He’s lost everything”
Losses
•
•
•
•
•
People in your life who are important to you
Activities that you really enjoy
Possessions that you value
Beliefs, hopes or aspirations
Pleasures or comforts you find satisfying or meaningful
– Personal Death Awareness Exercise
Meaning
• “When we are no longer able to change a situation…..we are challenged to change ourselves.” ‐
Viktor Frankl
• Sources for meaning:
– Work – doing something significant
– Love – caring for another person
– Suffering – courage during difficult times
– Man’s Search for Meaning
1
10/26/2015
Suffering In Medicine
• 1982 Eric Cassell, MD NEJM article later expanded to a book in 1991
• Suffering is experienced by people, not bodies
• That which threatens the wholeness of a person results in suffering
• Relief of suffering is an obligation of medicine
– The Nature of Suffering and the Goals of Medicine
Suffering
• Good symptom management does not necessarily relieve suffering
• Filing cabinet filled with symptom management focused articles
• By making suffering visible, we honor it and learn from it
– The Nature of Suffering and The Goals of Nursing
Suffering In Nursing
• Nurses bear witness to patient suffering
• Nurses experience personal suffering
• Nurses frequently inflict discomfort through various procedures which may intensify patient and nurse suffering
– The Nature of Suffering and The Goals of Nursing
Suffering At End‐Of‐Life
• Suffering is often intensified at the end‐of‐life when a patient may feel
–
–
–
–
–
–
–
–
Abandoned
Scared
Isolated
Alone
Uncomfortable
Not heard
Overwhelmed
Vulnerable
Suffering
Suffering
• Imminently dying patient ‐ protracted
• Clinically attentive care as requested by the family including IV antibiotics and artificial IV feeding
• Exquisite attention to physical symptom management
• So much worry, questioning, rushing, “fixing”, doing – prompted the question:
• Do you feel loved? No
• Seeing what he or she truly most needed, not what was “imagined” was needed
• Deep personal struggle to get in touch with true needs for
– Patient
– Family
– Clinician
• Overwhelming number of choices
2
10/26/2015
Moral Distress
• Clinician knows the appropriate action to take, but is unable to carry it out, and feels forced to give care contrary to his/her values
• Often occurs in end‐of‐life situations where the decision is made to provide aggressive life‐
sustaining treatments that are felt to put excessive burdens on patients and families
– PalliMed Case Conferences May 22, 2013
Moral Distress Case
• 92 yo nursing home resident, hospitalized with pneumonia improved with antibiotics
• Mental status deteriorating, only minimally responsive to family, unable to eat or interact
• Palliative medicine team consulted
• Family requests temporary feeding tube hoping patient has a chance to gain strength
– Pallimed Case Conferences May 22, 2013
Moral Distress Case
• Patient moaning and grimacing, unable to clear secretions
• Palliative team recommends low dose morphine to treat pain and dyspnea as well as a medication to clear secretions
• Attending physician concerned opioids might cause respiratory depression and lead to death
– Pallimed Case Conferences May 22, 2013
3
10/26/2015
Moral Distress Case
• That night bedside nurse charted several times that patient was screaming, only able to give Tylenol for pain
• Patient required wrist restraints to prevent her from pulling out her feeding tube
• Palliative physician and nurse haunted by the image of a dying 92 yo woman tied down and denied treatment for her pain
– Pallimed Case Conferences May 22, 2013
Moral Distress Case
• Palliative physician discussed case with the interdisciplinary team, receiving support for her concerns
• Contacted patient’s son and gently explained the signs of suffering that the patient was showing
• Son agrees to low‐dose morphine
– Pallimed Case Conferences May 22, 2013
Moral Distress Case
• Primary physician agrees to add an order for morphine
• Patient dies a few days later
• In what ways was suffering relieved? In what ways was suffering intensified?
– Pallimed Case Conferences May 22, 2013
Moral Distress
• The American Association of Critical Care Nurses recommends addressing moral distress with a four step process:
• Ask
• Affirm
• Assess
• Act
– Pallimed Case Conferences May 22, 2013
4
10/26/2015
Moral Distress
Moral Distress
• Ask: You may not be aware that you are suffering from moral distress. Signs may include physical illness, insomnia, fatigue, addictive behaviors, disconnection with family and community and either over‐involvement or disengagement from patients and families.
• Affirm: Validate the distress by discussing these feelings and perceptions with others. Make a commitment to caring for yourself by addressing moral distress.
• Assess: Identify sources of your distress, and rate its severity. Determine your readiness to act, and what impact your action would have on professional relationships, patients and families.
• Act: Identify appropriate sources of support, reduce the risks of taking action when possible, and maximize your strengths. Then you may decide to act to address a specific source of distress in your work environment. Suffering
Witnessing Suffering
No file folder
“It is taking a toll” Begin to talk about it as a team
Develop an awareness of suffering
Relief of symptoms (with morphine for example) is different from relief of suffering
• Helpless to fix suffering
• Sense of professional and personal shame, discomfort
• Often first response is “just do something”
• But more interventions may increase suffering
• Slow down, determine goals
• Simplify care if possible
Skills For Being With Suffering
Generous Listening
•
•
•
•
•
• Slow down and be with feelings of sadness, loneliness, fear, helplessness, hopelessness, and a sense of brokenness.
– The Nature of Suffering and the Goals of Nursing
• Listen without deciding whether you “agree or disagree with what is being said”, without trying to “fix” or offer advice, rather “to know what is true for another person at the time that they are speaking.” – Rachel Naomi Remen, MD
5
10/26/2015
Obligation To Relieve Suffering
People Will Never Forget How You Make Them Feel
• Obligation to address suffering in our patients, their families, and ourselves
• Look carefully at the ways we may unintentionally increase suffering
• “I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” – Procedures
– Reimbursement
– Training
– Prejudice
– Maya Angelou
• Ill equipped to address suffering
How Do They Make Me Feel?
• Young, morbidly obese (>600 pounds) male with end‐stage heart failure
• Previous ICU admission with history of intubation and severe pressure ulcers
• Gastric bypass surgery offered
• Prognosis less than six months if refuses surgery
• Competent patient refuses hospitalization
Suffering Intensified
• I felt:
– like an animal
– judged
– like I need to be fixed
– like an experiment
– coerced
Suffering Relieved
• I feel:
– calm
– comforted
– safe
– heard
– cared about
– cherished
– “I can trust you”
6
10/26/2015
Fixing/Judgment
Serving
• There is a distance between ourselves and whatever or whomever we are fixing. Fixing is a form of judgment. All judgment creates distance, a disconnection, an experience of a difference. In fixing there is an inequality of expertise that can easily become a moral distance. We cannot serve at a distance.”
• “We can serve only that to which we are profoundly connected, that which we are willing to touch. This is Mother Teresa’s basic message. We serve life not because it is broken but because it is holy.”
– Rachel Naomi Remen, MD
– Rachel Naomi Remen, MD
Fixing
Relieving Suffering
• Where is my need or the family’s need to help by “fixing” getting in the way?
• Our patients and families have within themselves the answers
• Stay with feelings
• Patience
• Develop trust
• Personal journey – find our own personal way to find shared connections – Be close
– Notice the details
– Find shared interests
• Manage our own anxieties in the face of relentless suffering
• “That’s fabulous! Where did you get it?”
Relationship Focused Care
• 48 yo male with Down Sydrome
• Hospitalized or ED visits 7 times in last year, dysphagia on swallow study
• Aspirated at group home 2 days after discharge
• Morphine and lorazepam initiated for dyspnea
• Held lovingly in the arms of the group home manager, and then his sisters as they arrived
• Team – hospital, inpatient palliative care, group home, family, hospice
7
10/26/2015
Training
Broken
• “Professional training is like a disease. It may be necessary to recover from it.”
• “When I first earned my degree in medicine...I had not been caught unaware by [life’s] strength in the midst of the most profound weakness. I had no sense of awe. I had thought that life was broken, and that I, armed with the powerful tools of modern science, could fix it. But life has shown me otherwise.”
• We are trained to see patients as broken
• To be fixed with escalating technology
• Wholeness is not a function of technology, but of relationship
• A shift occurs when a person is seen as whole, despite brokenness
• “It would not be easy, but I could make even this alright.”
– Rachel Naomi Remen, MD
– Rachel Naomi Remen, MD
Wholeness
• Resilience
• Presence
– Wonder
– Mystery
– Awe
•
•
•
•
•
•
Suffering And Relieving Words
•
•
•
•
•
•
•
•
•
Threatened
Vulnerable
Lost
Wounded
Overwhelmed
Apprehensive
Deprived
Violated
Broken
•
•
•
•
•
•
•
•
•
Dignity
Tenderness
Healing
Kindness
Compassion
Presence
Calm
Acceptance
Whole
Boundaries
Gentle self care
Balance
Interdisciplinary team
Healing rituals, blessings
Finding meaning in medicine group
Oxygen
Everything needs it: bone, muscles, and even, while it calls the earth its home, the soul. So the merciful, noisy machine stands in our house working away in its lung‐
like voice. I hear it as I kneel before the fire, stirring with a stick of iron, letting the logs lie more loosely. You, in the upstairs room, are in your usual position, leaning on your right shoulder which aches all day. You are breathing patiently; it is a 8
10/26/2015
beautiful sound. It is
your life, which is so close to my own that I would not know
where to drop the knife of separation. And what does this have to do with love, except everything? Now the fire rises and offers a dozen, singing, deep‐red to quietude, or maybe roses of flame. Then it settles gratitude, as it feeds as we all do, as we must, upon the invisible gift: our purest, sweet necessity: the air.”
‐Mary Oliver
References
References
• Cassell, Eric J. – The Nature of Suffering and The Goals of Medicine, Oxford University Press, 1991.
• Ferrell, Betty and Coyle, Nessa – The Nature of Suffering and the Goals of Nursing, Oxford University Press, 2008.
• Frankl, Viktor E. – Man’s Search for Meaning, Beacon Press, 1959.
• Oliver, Mary – Oxygen, The New Yorker, October 10, 2005, page 57. • Rachel Naomi Remen – Making Healthcare Whole Teleconference, June 20, 2013.
• Rachel Naomi Remen – Finding Meaning in Medicine: www.theheartofmedicine.org
• Scherer, Deidre – Works in Fabric and Thread, Surrounded by Family and Friends.
9
10/26/2015
References
• Scherer, Deidre ‐ Works in Fabric and Thread, The Last Year.
• Sinclair, Christian ‐ Pallimed Case Conferences, Cases: Working Through Moral Distress, Wed, May 22, 2013.
10