Impact of Grief: Ours and Those We Serve

Tani Bahti - RN, CT, CHPNExecutive Director Passages

Support, Education in

End of Life Issues

¡Vida! Educational Series

Educational Objectives

• Appraise the impact of grief on you as a provider

• List 4 possible manifestations of grief• Describe ways to support those who are

grieving• Identify ways in which grief opens us to

change and growth• Discuss the ways our own grief may impact

our ability to help others make difficult decisions

On Being Human

ON Being the Student

• Taking lessons from our patients and families

On Being a Healer

Healing requires the recognition ofhuman face of each person and thecommunication that both healer andthe healed share a bond that ties

themto each other through theirhumanity and their mortality.

-Rachael Naomi Remen MD

Emotional Manifestations of Grief

• Denial• Withdrawal• Anger• Acting out• Depression• Blaming• Guilt• Distancing

Physical Manifestations of Grief

• Sleeping• Eating• Joint Pain• Symptoms of ill person• Forgetfulness• Irritability• Stomach or chest pain• Weakness• Fatigue/over-active

• Responding to our grief and that of others….

My heart has broken... ...open

Understanding our Grief REactions

• Is it triggering our own losses?

• Is it incongruency between our perception of what we hoped for as a good death and what happened?

• Is it triggering fear about our future losses?

About Grief• There is no right way to grieve

• There is no timetable for grieving

• No one “gets over it”

• The pain of grief is much longer and harder than you ever thought possible

• Talking about loss divides the burden

• We can’t take away another person’s

grief

There is no way out of the desert

except through it.-African

proverb

There are no magic words

.

But there IS magic in the power of your presence

The Healing Power of Connection  “ I recently read a story about a cow who gave

birth to a stillborn calf. She was weak and in pain after the ordeal. And still, she managed to get up and walk a long distance across miles of fields to find her own mother for comfort. She was found in the distant field with her mother wrapped around her nuzzling her. Their two large bodies like one.”

~Rae Sikora  

By expressing our own grief, we may be providing the necessary permission for them to express theirs

• We are doing well with our grief when we are grieving

• Somehow we have it backwards• We think people are doing well when they aren’t

crying• Grief is a process of walking through some

painful periods toward learning to cope again• We do not walk this path without pain and tears• When we are in the most pain, we are making the

most progress• When the pain is less, we are coasting and

resting up for the next steps

www.hopeforbereaved.com

People need to grieve.

Grief is not an enemy to be avoided;

It is a healing path to be walked.

www.hopeforbereaved.com

The Work of Grief

• Changes our world

• Redefines our priorities

• Increases awareness of our own mortality and those around us

• Increases our sense of vulnerability

• Helps us live more consciously

Role of Hope and Healing

• avoid complicated grief through preparation

If I had only known….

• There are no do-overs

Recognizing the Barriers to Good Communication

• Fear

• Guilt

• Grief

When grief means not letting go

What does “do everything possible”

really mean?

30% cancer patients die in the hospital

Who are we really palliating?

Are we using technology as Are we using technology as buffer to ameliorate our own buffer to ameliorate our own

feelings of helplessness?feelings of helplessness?

We did everything…….We did everything…….

• I even raised with her the possibility that an experimental therapy could work against both her cancers, which was sheer fantasy.

• Discussing a fantasy was easier—less emotional, less explosive, less prone to misunderstanding—than discussing what was happening before my eyes. Oncologist

When unresolved grief or ability to let go affects our care

• Dr. S

• Chris and Colton

• My belief is that the use of heroic & experimental technology is often a moral outrage, showing callous disrespect for the sacredness of human life and pathetic inability to face the reality of human death

• Peggy Stinson

-The Long Dying of Baby Andrew

The number of respondents was 10,078 from 25 specialties through Medscape

• Would you ever recommend or give life-sustaining therapy when you judged that it was futile? • Yes, 23.6%• No, 37.0%• It depends, 39.4%

• Would you ever prescribe a treatment that's a placebo, simply because the patient wanted treatment? • Yes, 23.5%• No, 58.3%• It depends, 18.2%

• Would you hide information from a patient about a terminal or preterminal diagnosis in an effort to bolster their spirit or attitude? • Yes, I soften it and give hope even if there's little

chance, 14.6%• Yes, unless someone is going to die imminently, I don't tell them how bad it is, 1.7%• No, I tell it exactly as I see it, 59.8%• It depends, 23.8%

Just because someone is dying…

No one failed

The role of a healer is to be present in the midst of profound helplessness.

Understand Your Own Barriers

• Fear• Resistance• Death history• Discomfort with disagreements, anger,

grieving• Discomfort with helplessness• Making assumptions about what the

family knows/sees

Family Barriers

• Lack of information

• Misinformation• Technology• Unresolved issues• Fear• Ability to let go• Jinxing - “If we talk about it, it will

happen”• Inability to hear• happen”

Impact of Having the Discussion About End of Life Care

• People are not more depressed after having a discussion

• Less use of aggressive intervention and improved quality of life of those facing death

• Cancer patients live longer and more comfortably under hospice care

• Improved quality of life for patients is correlated to improved bereavement adjustment of caregivers after death.

• Results of NCI and NIMH study at the Dana Farber Cancer Institute Study

The Advocate’s Role

• Investigate

• Explore

• Educate

• Advocate

• Support

Illness is a dynamic

and transformative

process

Are you giving up on me?

• “I do not think we should continue with the

cancer treatment. It is time to stop focusing just on the cancer and spend more of our effort focusing on the rest of you.”

• Atul Gawande, NYT article, “Letting Go”

Giving up vs. Letting Go:Defining the Good Fight

Transforming Dying

• Acknowledging, embracing, preparing despite the pain

Life is not measured by the number of breaths you take,

but by the number of moments that take your breath away.

A New Dialogue

• What do I need to live my remaining life as well as possible?

• What do I need to accomplish?• What is my source of strength?• How do I still have value?• Where do I find meaning in all this?• How can I help my loved one/family to

make the best of difficult circumstances?

Obtaining Closure

Facilitating a good death

While death is inevitable, knowing you are loved is not. When I saw Hannah’s radiant face in the center of that circle, I realized that healing can happen even without a cure. No matter when Hannah died, she would die knowing that her life mattered, that she was completely loved. I couldn’t imagine a more profound healing than that.

Maria Housden, excerpt from Hannah’s Gift - Lessons From a Life Fully Lived

People may not remember what you said.

People may not remember what you did.

But they will always rememberhow you made them feel.

What you leave behind is not what is engraved in stone monuments, but what is woven into the hearts of others. -Pericles

Starfish Story