Palliative care

For palliative care in Covid times my dear collegue Luis Kaserer and me developed end-of-life rituals. These rituals can be performed in your own house, in the hospital or wherever your dying loved ones are. Especially for caregivers and family/friends who can't be present at these crucial and meaningful times. Below you can choose which rituals suits your situation best. Feel free to use, it's free! Also on this page an interview with Nina Redl, chaplain for the American Palliative care network.

Spirituality is a basic need

March, 2021

Intro

I'm Beatrijs Hofland, Chaplain (or rather: spiritual counselor). I work in an institution for elderly care in the south of The Netherlands. I've been performing this wonderful job since my graduation in 2001 (Uni degree in Theology), at first in a general hospital, later in a rehabilitation center and since a few years in elderly care. Palliative care has always been at the center of my focus and attention, for working with elderly or people with life threatening diseases very often contain a focus on end-of-life spirituality. In The Netherlands you can either work as a general spiritual counselor or as a chaplain with a connection or mission from your own denomination. Mine is Protestant, but my current position is in a Catholic home with a very long and fascinating tradition of missionaries.

Spirituality to me is a primary , basic need that shouldn't be left out when everything and everyone else has left you. 

Spirituality is looking for answers in your day-to-day life that concern the width, the length and depth of our existence. And, quoting Rilke, 'Be patient toward all that is unsolved in your heart and try to love the questions themselves'. Spirituality is what gets us going when the going gets tough, is longing for connection and somewhere deep down, knowing that we won't be left alone. I like to describe spirituality as a primary , basic need that shouldn't be left out when everything and everyone else has left you. In that sense, it could be a treasure that we can give each other or show the direction in your own life-answers. Or maybe it is like what an old woman told me at her deathbed: 'Now I know what is important. I only hope my children will learn earlier in life than I did'. This to me means that spirituality always involves relations with the ones near to you, and the existential connection to a deeper or higher, transcendent Being.

The element of good care is relating to each other 

I dare to state that spiritual care work or rather the sensibility to life's not so visible values definitely attribute to an improved quality of life. A Dutch study in the field shows that patients reportedly sleep better and worry less when having had a conversation with a chaplain. Stress levels lower, people feel more understood and at peace with the circumstances they're in. But maybe more important: as medical trained professionals, patients and caregivers we have something great in common: our shared existence, our common humanity. This asks for compassion and for room for spiritual care, an inner free space. And it relates to the ethical component: what is good care? In The Netherlands we developed a wonderful instrument to work with: the theory of 'presence'. In short, it means that the element of good care is relating to each other, trying to find out what your patients needs, from you, from life, from someone else. These questions are spiritual in itself and lead often to a spiritual attitude which is needed in good caretaking.

Used as we were to 'giving', we now received so much

We all have met people who we'll never forget, so here's my story. In the rehabilitation clinic I worked, a man in his 50's came to stay for a short while, let's call him Mr. J. He had Kahler's disease (multiple myeloma), allegedly not life-threatening, or so his doctors told him. He had been working as a palliative nurse himself and was the most suitable man for the job I had ever met. During his stay, unexpectedly, his situation worsened. The doctors and nurses talked to him to cautiously warn him his perspectives changed. But he smiled and tried to put them at ease: he already knew and spend his time in the center to make sure everyone who cared for him could come to terms with the fact they couldn't heal him. So it was the world upside down, as we all felt, used as we were to 'giving', we now received so much. 

Later on he went home and I visited him for the last time. He was sitting in his favorite chair, watching the seafront, his oxygen and medication bothering him just a bit. With the last force and energy left, we chose the right texts and music for his funeral and he told his wife for the last time why and how much he loved her. The next day he would be euthanized. His own choice. He let me be present in his life and in his vision and worldview that his death would only mean a transition in life. The last thing he told me: "Don't say goodbye, pay attention to the wind in the trees and the rays of sun on your path, it may be me smiling at you". Back in the center I shared his words with my colleagues and staff. I guess you understand why I'll never forget Mr J. And hope you all will have your own Mr. J story.

Spirituality is a natural attitude for some of us and can be trained to others. 

To be sensitive to life-questions and longing for meaning, is something some of us have as a natural attitude and can be trained to others. There are, worldwide, wonderful tools and diagnostic models such as Mount Vernons three questions ( cf https://www.oncoline.nl/uploaded/docs/Zingeving/A_8.pdf?u=1SxZEf) or for example.George Fitchett's model (https://www.healthcarechaplaincy.org/docs/publications/sri/pb_discerning_patient_needs_spiritual_assessment.pdf) etc. These are ways of entrance to the 'secret space' everyone has and is worthwhile to explore. Once you have your 'diagnose' of what is needed on the spiritual level, you can either be a compassionate other/caregiver or help to find significant others or professionals to engage further in spiritual care.

Don't let it scare you to enter this 'sacred space'

Spirituality is, despite of the mysterious connotation, a very basic potential and need that should always be included in compassionate and professional palliative care. Don't let it scare you to enter this 'sacred space', be your own instrument and trust your instincts alongside your professionalism. And enjoy being focused and present, it is our natural state of being and enlightens your soul!

  Beatrijs Hofland, MTh