Compassionate Journeys: Lessons From My Work With the Dying

By G. Jay Westbrook

In this amazing work, Westbrook generously shares with us the tools he has used and created over the last 30 years to bring comfort "" physical, spiritual, emotional, and intellectual "" to the dying, the families of the dying, and their professional and lay caregivers. Using the narrative style of Native Americans, Westbrook role-models his tools through a series of powerful, poignant, and moving stand-alone stories which illustrate precisely how to journey and navigate some of the most difficult End-of-Life situations, and to do so with Grace, equanimity, and deep partnership. Whether those dying are young or old, male or female, sober or loaded, sheltered or homeless, alone or surrounded, appreciative or combative, terrified or curious, rich or poor, or any other pairings you can imagine, this book engages the reader in ways to quickly establish trust and rapport and to then use humor, curiosity, reframing, and other tools to challenge, support, and co-journey with patients and families in ways that are transformative. The beauty of this book is that each brief chapter is a stand-alone teaching tool that can be used independently of the rest of the book. It can be used as a supplementary text for students, and in continuing education workshops for professionals. It can be used by the dying themselves and/or by their families. It can be read in quiet contemplation, or aloud as a stimulus for conversations of depth and weight and of hope and transformation. The power of this book and its tools lies in its role-modeling of how to simply use our humanity "" our suffering, vulnerability, courage, humor, compassion, passion, curiosity, honor, love, and imperfection to create deep and lasting connection as we co-journey toward the End-of-Life.

• Language: English
• Publisher: Christian Faith Publishing, Inc.
• Release date: Jun 26, 2019
• ISBN: 9781645153528

Book preview

Chapter 1

A Murderer Seeks Redemption

The hospital’s harsh overhead speakers summoned me to the oncology unit for a pain consult. The moment I stepped off the elevator, I heard muffled screams—screams that became louder and louder as I neared the patient’s room. A blanket taped over the patient’s door and moistened towels under his door did little to contain the sounds of his suffering from the physical pain of his cancer.

I stepped to the nursing station to look at his chart, rather arrogantly expecting to see inadequate pain orders. I was wrong and the pain orders were excellent, but upon looking at the administration record, I saw that none had been given. When I asked the nurses why the pain meds weren’t being given, they said, Go talk to the patient. He’s refusing all pain meds.

Upon entering the room, the patient was writhing in pain and sweating profusely. I used Ah-Breath breathing (see chapter 12) to calm him enough to speak about his refusal to accept any treatment of his pain.

He revealed that he had committed murder as a young man, served thirty-five years behind bars, been a free man for thirteen years, and was now in our hospital—dying with an agonizing metastatic cancer. He confirmed that he’d refused all pain medication and intended to continue to do so. He was lucid, understood the consequences of his decision, and possessed decision-making capacity. Of course, the question was why he would make such a choice.

He explained that his God was a judgmental, unforgiving, and punishing God, and he knew that after his death God would have him suffer horribly for an eternity because of the murder he committed. His thinking was that if he could suffer enough here while still alive, it might balance the scales and thereby reduce the post-death suffering for which he knew he was destined.

Once this information was available to the team, each discipline—physicians, nurses, chaplains, and social workers—offered support but tried to convince him that he was wrong—his choice was wrong, his concept of God was wrong, his way of trying to right the wrong and balance the scales was wrong, his suffering was wrong, etc. People spoke of how much he was suffering—not just physically but spiritually and existentially—and spoke of his spiritual dilemma. Finally, some people shook their heads and commented on how sad it was that this man had failed to discover the loving and forgiving nature of God.

There’s so much going on in this story. It seems to me that great spiritual arrogance was being practiced of the My concept of God is right and yours is wrong variety, and it was being practiced by both sides. Rigid beliefs, closed minds, and hardened hearts are seldom compatible with new vision or new experience. My favorite Herbert Spencer quote is: There is a principle which is a bar against all information, which is proof against all arguments, and which cannot fail to keep a man in everlasting ignorance—that principle is contempt prior to investigation.

I do not believe that our patient had a spiritual dilemma nor do I believe he was suffering spiritually. He had a spiritual situation—how to reduce his post-death suffering. He had a spiritual solution—balance the scales by enduring some physical suffering here. His situation and solution were compatible with his belief system and his value system and he was convinced that his solution would work. Therefore, he embraced his physical suffering and was pleased to be able to use that physical suffering to accomplish his spiritual goals.

I believe it was the clinical team members who were suffering spiritually and who had the spiritual dilemma. Their dilemma was How do we convince someone who is resistant to our intervention to allow us to end their needless suffering? when in fact, the patient saw his suffering as needed, not needless. We do not get to determine for another what is needed or what is needless.

The team’s spiritual suffering came out of an unwillingness—at worst—or difficulty—at best—accessing the great humility, courage, compassion, and restraint required to bear witness to another’s suffering and do no more, unless and until invited to do so. This situation demanded that we lay down our tool kits and simply sit with a compassionate presence for ourselves, for our patient, and for all who suffer.

Finally, our patient died the death he wanted—one of exquisite agony and physical suffering. He died teaching us about compassionate presence and bearing witness. I can only pray his suffering accomplished the balancing of the scales he was so convinced would occur.

Chapter 2

Caring for a Parent Who Never Cared for You

There are so many ways in which a parent might not care for their child—neglect, abandonment, deprivation, sexual abuse, physical abuse, verbal abuse, emotional abuse, manipulation, codependency, enmeshment, infantilizing, undermining, favoritism, competitiveness, sabotaging, belittling, perfectionism, imposed decisions about marriage or career, hovering, shaming, and on and on.

It’s not uncommon for those who were not cared for as kids to grow up with very ambivalent feelings about those parents in general and specifically about having to provide care for those aging parents as they become more frail and dependent.

I was two and a half years old when my stepmom came into my life, following my birth mom having abandoned the family when I was six months old. By the time I was three, I’d been placed to live with another family so my dad and stepmom could pursue their careers. My Story (chapter 11) details the horror of that situation.

At age six, I was reunited with my dad and stepmom. She had loving feelings toward me, but was also filled with rage and was extremely violent and highly inconsistent. She mocked me and beat me to the point where I couldn’t leave the house until the bruises faded. Her response to something I said might be fine one day, while the next day, my saying the same thing might result in a punch to the face and a knocked-out tooth. At least she taught me how to take a punch.

Fast-forward many years and this once stout woman with the fast mind and faster fists was living in a nursing home with end-stage Alzheimer’s disease. She was down to eighty-nine pounds, bedbound, contracted, incontinent, nonverbal, and seemed unable to recognize anyone. Her jaw appeared to be set in anger and her eyes stared straight ahead with a steely look. Although I had forgiven her for my childhood experiences, I did not see her with any regularity, as she seemed to not know who I was when I did visit.

Her physician called, saying she wanted to place her on hospice and asking if I was agreeable, and if so, requesting that I meet with the hospice nurse to sign the paperwork. We met at the nursing facility, and while my stepmom did not appear to be actively dying, she did look as though she had only about a week to live.

The hospice nurse asked if I wanted to spend a few minutes alone with my stepmom before signing all the paperwork, and I said I did. Because of my understanding that the last sense to go is hearing and my belief that even the confused can comprehend—at some level—those things being said to them at the end of life, I said a few things.

She loved the Spanish language, so I initially spoke to her in Spanish and whispered what I say to many of my Spanish-speaking patients: "Entra a la muerte con sus ojos abiertos; entra a la muerte con su corazon abierto, y vaya con Dios. (Enter death with your eyes open. Enter death with your heart open and go with God.) She was a lifelong confirmed atheist, and saying vaya con Dios" was my final gentle dig at her for her lack of gentleness in my childhood.

Finally, I chose not to talk about the ways she had failed to protect me or the ways she had hurt me or to then self-righteously forgive her. Rather, I just focused on the positive. I thanked her for teaching me to take a punch, for giving me my work ethic and my respect for the working poor. I then said: A) that I loved her, B) that I would miss her, and C) that I would be okay, and that if and when she was ready, she had my permission to let go.

As soon as those words left my lips, she took three breaths in, three breaths out, and was gone. It was clear that hearing the A, B, C and the word permission gave her the go-ahead she had apparently been waiting for to just let go and die.

What’s interesting is that I have shared this tool with so many families over the years and the results have been so similar. I assure them that if the dying family member is not ready to leave, saying these words will not send them on their way. However, if they are ready to go, wanting to go, but holding on for the family, these words can be freeing and allow the dying family member to hear that their loved one will be okay and that they have permission to leave.

While I’ve never seen the leaving happen as quickly as it did with my stepmom, I have seen it occur again and again within minutes—eleven minutes, four minutes, nine minutes—of those words being said. And, interestingly, the actual word permission seems to make a difference. Families who say something similar, such as You don’t have to hold on for us, you can let go seem to not experience the same outcome as when they actually use the word