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Compassion and Bereavement:Will We Never Learn? by Rea L. Ginsberg, LCSW-C, ACSW, BCD

Wednesday, 13 Nov 2013 11:30

If you don’t like the way the world is, you change it.

You have the obligation to change it.

You just do it one step at a time.

                                                                                — Marian Wright Edelman

compassion-definition

Compassion is a word overused and a call to action under-practiced, under-utilized.  What it is: a deep awareness of the suffering of another, and the wish to relieve it.  A feeling of distress and pity for the misfortune of another, and the desire to alleviate suffering.  A feeling of deep sympathy and sorrow for someone struck by misfortune, and the desire to alleviate the suffering.  Synonyms include but are not limited to: sympathy, sorrow, and pity.

A primary example of the search for compassion in action is known as The Charter for Compassion.  It came about on November 12, 2009.  “The Charter for Compassion is a cooperative effort to restore not only compassionate thinking but, more importantly, compassionate action to the center of religious, moral and political life.  Compassion is the principled determination to put ourselves in the shoes of others, and lies at the heart of all religious and ethical systems.”1   The Charter, it states, activates the Golden Rule around the world.  The Charter petition has so far gathered nearly 100,000 signatures from many countries and many traditions.  It is “a document that transcends religious, ideological, and national differences.”

The Stanford University School of Medicine also conducts significant research on compassion through its Center for Compassion and Altruism Research and Education, CCARE.2   And Harvard University and the University of California have jointly conducted research on compassion, finding that it is like yawning: it catches on.  It is contagious.  Acts of compassion motivate others to be compassionate.3

A massive body of current literature and many well-known international figures (e.g., Mahatma Gandhi, Martin Luther King, Jr., and the Dalai Lama) acknowledge the primary importance of compassion.  It is a growing field of study.  The literature also complains about the noticeable absence of compassion in health care as practiced now.  Durable compassion fatigue is noted by virtually all the health care professions.  Articles, books and manuals are filled with living examples and stories of the failure of compassion.  The failure leads to increased patient-caregiver suffering.  When suffering is increased by our own hand, the whole health care system fails.

The causes of compassion failure are surely multiple but not arguable.  Caseload overload.  Lack of time scheduled for direct patient care.  Ever-increasing paperwork.  Increasing government oversight and health insurance regulations.  Financial pressures and facility consolidation.  Poor professional training in all the health care professions.  Wrongful prohibition against having and expressing emotion in front of patients-families – termed “unprofessional” or “over-involved” or “counter-transference.”4   Sleep deprivation.  Burnout.  Political discontent at the highest federal government levels, setting up worthless role models.  American society’s indifference toward, and disrespect for, compassion.  The general social inclination to a me-first, self-absorbed attitude toward everything of human significance – the age of narcissism.

A true story sharply illustrates the problem.

Jim was a hospice patient, married for 46 years to Rebecca.  They had always been close and openly affectionate.  In in-patient hospice, the couple would hold hands and reminisced.  Then Jim had a “bad spell.”  He was uncomfortable and agitated.  Rebecca took off her sweater and shoes and climbed into bed with Jim.  She slid her arms around him and nuzzled his neck.  “In a matter of minutes, my embrace calmed us both.  It was such a beautiful moment, I’ll never forget it.”  At the next moment, one of the hospice nurses barged into the room.  “The nurse, hands on her hips like some schoolmarm, face aglow with disapproval, glared at me.  ‘What do you think you are doing?  We can’t have this sort of thing in here.  I’ll have to ask you to leave that bed immediately.’”   Rebecca couldn’t speak.  She was so ashamed.  She untangled herself from Jim, climbed out of bed, and turned beet-red with embarrassment.  “It never entered my mind that cuddling with my dying husband, soothing and comforting him, might be interpreted as something inappropriate.  When the nurse finally left the room, I hung my head and wept.”5

What happened here?  This was a hospice patient in a hospice facility.  Richard Wagner, the author of the article describing this incident, writes that the patient’s right to privacy was violated.  The patient’s wife was shamed for an act of loving care.  Her grief and anguish were compounded by guilt and shame.  The privacy of medical records appears to take precedence over an individual’s personal privacy.6   “I also believe that when we violate the privacy rights of another it’s a form of abuse and harassment.”7   Will we never learn?

This is, at very least, a failure of compassion.  Looking at life from upside down.  The nurse’s behavior was appalling, offensive, and unethical.  It was actively harmful to the wife, and through her, to the patient.  It would greatly increase the coming grief load and emotional suffering of Rebecca.  Guilt and shame are often transformed as the mind attempts to cope with intense feelings.  Rage against the accuser is the end product, the result.  All three emotions are painful to experience and difficult to manage.  These emotions form an unwelcome new layer of grief, a layer so avoidable and unnecessary.  For Rebecca, the compassionate health care system had collapsed in a thoughtless instant.

Reactions to the article tended to strongly agree with the author’s opinions.  Comments ranged from (1) outrage, to (2) shock that this could happen, especially in a hospice setting, to (3) potent suggestions that the offending health care worker be immediately fired.  Some people remarked that this looked like behavior from the 1950’s rather than the present 21st century.  Several people observed that perhaps the worker needed suspension plus retraining.  One insisted that the worker was in the wrong profession.  Indeed.  A very good grasp of the obvious.  The worker should be counseled out.  This is not a hospice mind.

Doing nothing compassionate for others is the undoing of ourselves.8

Compassion is such a vital component of the bereavement process and grief work.  It is necessary for the bereaved in his effort to cope with grief.  Connection is essential.  When others reach out to the bereaved with true compassion, the mourning is eased.  Loneliness becomes not quite as intolerable.  The emotional turmoil is soothed.  There is nothing more important in life than this gentle, caring human connection.  One experienced health care worker and blogger states that compassionate connection is a paradox.  This is an interesting and refreshing perspective. “The paradox of human connection [is that] our deepest moments of shared fear, pain, and loss can bring healing – and even joy.”9

Such compassionate connection is a reawakening, the beginning of a rebirth for the bereaved.  It heralds a reentry into a livable everyday life.  It is a promise of future reintegration.  It is “a radical insistence that it is not in and by ourselves that we are able to restore the meaningfulness of life, but in the company of others.”10   To receive compassion is usually to feel understood and accepted.  Our lives may be permanently altered by loss and subsequent grief.  Understanding and acceptance then take on even greater significance because we have entered a new stage of self.  That new self needs validation through the compassionate connection with others.  Compassion is also a seedling of the will to give back, to return gratefully and graciously what was given compassionately.  That is what compassion does for the bereaved.  It is important.  We need it.  It matters.

“No act of kindness, no matter how small, is ever wasted.”11   Our bereaved caregivers should not be deprived.  They need not be deprived.  We cannot let that happen.  We must teach compassion and practice it.  This is our ethical obligation.  This becomes our pledge to the bereaved – as well as a promise to our patients.  We should work toward it with focus and intent.  One step at a time, positive changes do occur.  Bereaved caregivers draw comfort and strength from compassion.  They grow from it.  Strength and growth.  Actions have consequences.  Compassion changes lives.  We, too, can grow and thrive from the conscientious and deliberate practice of compassion.

The giver of compassion is the gift to the bereaved.  “A word of praise can give strength to someone losing the will to carry on.  We never know, at the time, the ripple of consequences set in motion by the slightest act of kindness…This is the only legacy worth leaving: the trace we leave on other lives, and they on others in turn.”12

We do not need to be perfect to be good.

————–

References:

1. The Charter for Compassion, http://charterforcompassion.org .

2. The Center for Compassion and Altruism Research and Education (CCARE), StanfordUniversity, http://ccare.stanford.edu .  Its teacher certification program is titled, “Compassion Cultivation Training,” or CCT.

3. HarvardUniversity, www.harvard.edu .  [à search: “compassion”]

This research, and that of Stanford University, are also reported in a Huffington Post article by Carolyn Gregoire, “If we could tap into this quality (which we can), the world would be a better place,” 29 October, 2013, www.huffingtonpist.com/2013/10/29 .

4. Please see:

a. Elizabeth Dzeng, MD, MPH, “Bringing emotions back into medicine,” 28 October, 2013, www.kevinmd.com/blog/2013/10/bringing-emotions-medicine.html .

b. David Bornstein, “Medicine’s search for meaning,” 18 September, 2013, New   York Times online, http://opinionator/blogs/nytimes.com/2013/09/18/medicines-search-for-meaning .

c. Monica Williams-Murphy, MD, & Kristian Murphy, Its OK to Die, USA: MKN, LLC, 2011, Chapter 12, “A Good Death,” the story of Mrs. Sharpley.

5. Richard Wagner, “It Never Entered My Mind,” blog: The Amateur’s Guide to Death and Dying: Enhancing the End of Life, 19 September 2013, http://theamateursguide.com

6. Ibid.

7. Ibid.

8. Similar phrase attributed to education reformer, Horace Mann.

9. Mary Ann Barton, “A Story about my Hands,” Joyous Paradox: A Blog for Health, Healing and Caregiving, 28 October 2013, http://joyousparadox.com .

10. Rabbi Jonathan H. Sacks, PhD, To Heal a Fractured World: The Ethics of Responsibility, New   York: Schocken Books, 2005, p. 221.

11. Attributed to Aesop, the ancient Greek fabulist (story teller).

12. Rabbi Sacks, op.cit., pp. 271 & 223.

 

photo credit:www.mindingthebedside.com

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7 thoughts on “Compassion and Bereavement:Will We Never Learn? by Rea L. Ginsberg, LCSW-C, ACSW, BCD

  1. Carol

    Rea,
    I just want to affirm what you are saying about the importance of compassion. My beloved brother-in-law was dying of liver failure and became extremely agitated, so much so that he was a danger to himself. He couldn’t walk, but wouldn’t stay in bed. He had voiced one request about his final days, he wanted to die at home. My sister and niece had a horrendous night when he didn’t recognize them and became belligerent, clearly something else needed to be done. The home hospice nurse arranged for inpatient hospice care several miles from their house. I was on my way to help, but the trip was 7 hours and I arrived late at night at the hospice facility. After a few hours, the staff set up 2 chair beds in his room, there were three of us, me, my niece, and my sister. They suggested that my sister get into the bed with her husband. I was exhausted, having trouble staying awake. When I heard them tell her that, I knew we were where we should be, the best place for my brother-in-law. Any guilt we felt about not keeping him at home to die was dispelled by the compassionate care we all received there. That one act started the “ripple of consequences set in motion by the slightest act of kindness” you cite in your article. The six days we were there until he died built on that one act, and we knew we had made the right choice.

    Reply
    1. Rea

      Carol, what a lovely story! Thank you for telling it! It’s exactly right: some hospices and health care workers know what is human and compassionate and necessary. We are lucky to have their guidance as we walk the path to better practices. I hope the help provided by the hospice staff was helpful to you & family in later bereavement. — Thank you, and very best to you. Sounds like you did just the right things for your brother-in-law.

      Reply
  2. Ann Becker-Schutte (@DrBeckerSchutte)

    Rea,

    This was a powerful article–and such an important topic. As I was reading, I found myself wishing once again that mental health and physical health were more integrated. I know that mental health practitioners have failed in compassion too, but psychologists are trained to hear the stories and value that compassion. I’d love to share that training with others.

    Warmly,
    Ann

    Reply
    1. Rea

      YES, Ann, and thank you for your comments! All of us in the health professions are educated to listen with compassion. Sometimes it works well, sometimes not. We need to work harder to see that our students are chosen well and taught fundamental ethical concepts! Just as you say, it’s important! — Thank you for the affirmation. Your own work is so helpful! Let’s keep moving forward – together.

      Reply
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