Visiting Jim at the Palliative Care unit several years ago reminded me of one simple truth: life ends and that’s precisely what makes it so valuable. In fact, I am often a witness to a dimension of human life, what I call, “the spirit.” It also made me wonder, “Why is spirituality important when we die? So, I reflected and researched to find out.
So, why is spirituality important at the end of life? Spirituality is important near the end of life, because of the significant risks when coping with death like meaninglessness, emotional pain, and isolation (known as Spiritual pain). To assist in resolving spiritual pain caregivers offer presence, life review, and collaboration.
There’s a lot involved with your loved one is passing away. When we come to the end of our life, new aspects of our humanity can arise. Feelings of regret, the need for resolution, our destiny,
According to Jim [ref]fictitious name[/ref], he had never thought about the deeper meaning to life. He never had reflected on who he might need to forgive or even what to do with this side of himself. He was a simple man who didn’t talk much.
But as he transitioned from palliative care to hospice, I witnessed that if you’re not a “spiritual” or “religious person,” these spiritual needs and spiritual pains can still arise.
That’s why I think it’s vital for us to continue reflecting on this question, “Why is spirituality important at the end of life?”
Why is Spirituality more important than we thought?
The truth is, if you or someone you know is diagnosed with a terminal illness, we noticed that you could be at a higher risk for depression, meaninglessness, anxiety and overall poorer psychological and physical well-being. [ref]Park C.L, Sacco S.J. Heart failure patients’ desires for spiritual care, perceived constraints and unmet spiritual needs: relations with well-being and health-related quality of life. Psychology, Health & Medicine 2016; DOI:10.1080/13548506.20016.1251813[/ref]
Just from a patient satisfaction perspective, people want to have those deep conversations about what their life meant, where they might be going in the afterlife, what legacy they will leave behind.
For the last 7 years of working with people at the end of life, I’ve noticed that people have a need to discuss these qualities and if they don’t they enter into something called, “spiritual pain” or even “spiritual distress.” Spiritual Pain is:
Pain caused by
extinction of the being and the meaning of Self.”[ref]
Tamura K, Ichihara K,Maetaki E, Takayama K, Tanisawa K, Ikenaga M. Development of a spiritual pain assessment sheet for terminal cancer patients: Targeting terminal cancer patients admitted to palliative care units in Japan. Palliat Support Care 2006;4:179-88[/ref]
When we think of spirituality we often think of some kind of religious experience. Although experience is part of spirituality, it’s more than that. It includes our capacity for meaning, our relationship to existence itself, and sometimes our relationship to a higher being (Ideal Self, G-d, Universe, etc.).
Spirituality is the dynamic dimension of human life that relates to the way persons (individual and community) experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/or the sacred [ref] Nolan, S.; Saltmarsh, P.; & Leget, C. (2011). Spiritual care in palliative care: Working towards an EAPC Task Force. European Journal of Palliative Care, 18 (2): 86-89. See also van de Geer, J., and Leget, C. (2012). How spirituality is integrated system-wide in the Netherlands palliative care national programme. Progress in Palliative Care, 20: 2, pp. 98-105. Please refer also to the website of the European Association for Palliative Care: http://www.eapcnet.eu/Themes/Clinicalcare/Spiritualcareinpalliativecare.aspx. Last accessed February 19, 2013. [/ref]
As you can see, spirituality is pretty broad. So at the end of life its only natural that a person would be thinking about ultimate concerns:
- What did I do with my life?
- What will I leave behind? (Legacy)
- What’s the meaning of life?
- I wished I did that differently. (Regrets)
- I wished that person would forgive me (resolution)
- I hope the next life is better (Hope)
- I need acceptance (peace)
- Is there someone out there that loves me (Love/Belonging)
- Has G-d Forgiven me? Will I be punished? where will I go after this? (Transcendence)
Without asking these questions freely the can feel bottled up. They need to be shared with a community of caregivers and friends as the person feels so ready to do so. But if they do, it can significantly improve the dying process.
Because dying is really about living, what did we do with what was given to us?
What are the basic spiritual needs people have at the end of life?
First, and foremost, people at the end of life need presence. Presence may sound a little esoteric, but it’s surprisingly simple and wonderfully effective. When I say presence I mean that non-anxious and non-judgmental presence.
Those at the end of life want more than just pain management. They want to be acknowledged as a human being who feels and wonders what life is all about.
They want an active listening presence. Someone who will take them seriously.
Someone who can give their full attention to them.
Second, they have a need for story. What is their illness like from their perspective? What is meaningful to them?
Why is life the way it is from their perspective? With these questions is an acknowledgment that we are in their story too. They are not an actor in the story of our caregiving.
We are actors in their story of life and death. We need to see human beings as storied creatures. They have multiple chapters in their lives.
With Jim, we went backward, we went forward, and we stayed in the present. Each chapter of his life unfolded new opportunities for reflection. Each chapter was a telling of his life to me and at times I shared chapters from my story too.
This created a present intimacy. At the end of life, people often want
Third, they need collaboration or “co-creating” as one study said. In spiritual
It’s a relationship of mutuality of dialogue. Caregivers, especially spiritual health practitioners do not own the corner on making meaning at the end of life.
We are learning too. In this way, people become our teachers. I learned a lot from Jim telling me what was important to him every step of the way. He wanted a partner, not a coach.
He wanted someone to join him on the journey and possibly be changed by the journey too.
Walking with someone through the end of life means willing to transform as they are along the way.
How to meet your spiritual needs at the end of life?
Palliative Care and hospices in the West have been trying a number of interventions to handle spiritual distress. First, there’s just good solid spiritual care one can offer.
Sometimes a listening ear is all that is needed[ref]Chandra PS, Akhileswaran R, Chaturvedi SK, Shinde U. Caring at home: Frequently asked questions by persons with advanced cancers and their caregivers. Published by BHT center for Palliative Care Education, PaCE Series 1, Bangalore; 1999[/ref]
Spiritual care practitioners are most known for a client-centered approach which allows people to come to their own conclusions. This is especially important at the end of life because its easier to be suggestible when you feel so vulnerable.
Spiritual care comes alongside you to discuss the meaningful aspects of your life through open dialogue.
With Jim, we talked about his connection with his family. It turned out he needed some resolution with his brother. So on a weekly basis, I checked in with him (a couple of times visiting his home) to see how his relationship with his brother was going.
At times we discussed the feelings he had, which was especially helpful for his wife. Sometimes he opened up more to me then after 30 years of marriage.
For the wife, she was happy that he was opening up because he was visibly nervous, but just kept saying, “I’m alright.”
Spiritual Care at the end of life is really about reflecting on the life of the past, being present with the now, and planning for a legacy to leave behind in the future.
Another solution is psychotherapy in group settings. Meaning making therapy groups walk through a step-by-step process of examining the sources of meaning in your life.
Based upon Victor Frankl’s experience of developing inner resilience while at the Nazi Concentration camp, Cancer clinics around the US in particular, are finding peace and coping with advanced cancer patients.[ref]Brietbart W. Spirituality and meaning in supportive care: Spirituality- and meaning-centered group psychotherapy interventions in advanced cancer. Support Care Cancer 2002;10:272-80.[/ref]
Lastly, many people with end of life are reaching out to complementary medicine. I know the unit I work on has an art cart with paint, paper, and crafts. We also have a labyrinth table, so you can move your finger around in a meditative state.
We have a phenomenal music therapist. Here’s a list people are trying to cope with their end of life circumstance:
- Pranic healing
- Yoga
- Pranayama
- Transcendental meditation (T.M.)
- Sudarshan Kriya Yoga (SKY)
- Music Therapy
- Guided Imagery
- Tai Chi
- Reiki
- Aromatherapy
- Ayurveda and Naturopathy
The alternative medicine and spiritual care practices such as prayer, meditation, and ritual[ref]Chaturvedi SK. Ethical dilemmas in palliative care in traditional developing societies, with special reference to Indian setting. J Med Ethics[/ref] had a huge result on our palliative care unit.
Perhaps my favorite practice of late is guided imagery. With the person’s permission, I lead them through a guided imaginary setting engaging a scene, senses, and memory.
I’m always surprised by the insights they come up with on their own. I’m excited when they arrive at a sense of peace.
How did the story end with Jim?
Although Jim was a not a spiritual or religious person, he had a lot of spiritual aspects coming up for him. It took him some time, but when he arrived at the hospice he and I spoke of finding peace and resolution with life.
About the day before he died, he was calmer and more present to his family. It took a team of caregivers having conversations with him, listening to him and giving him permission to share his fears.
But in the end, he found his Self before passing and even used some Catholic thought to make meaning for his life to come (which was all on his own). I find this happens too, we tend to use what worked for us in our earlier years.
Related Questions:
What are some guidelines for Spiritual Care in Hospice? Guidelines are generally non-binding and normative rather than prescriptive measures on how to approach an issue. In this case, a number of spiritual care associations have put together documents in the last 30 years detailing the competencies needed to address spirituality in the hospice setting, including the level of education, and level of competencies. For a general overview of these guidelines click here.
Why is Spirituality important for palliative care nurses? Spiritual Care is important for nurses because addressing the spiritual needs of the person has positive effects on the their stress response, interpersonal relationships, spiritual well-being. Nurse’s who access Spiritual Care for their clients also experience reduced moral distress. But there’s a lot more to it. Click here to see how spirituality is important for every nurse to practice. The last one will surprise you.
