Palliative care is optimally provided by multiple experts (for example, physician, nurse, social worker, and chaplain) working as part of a team, in which case questions that are missed by one expert are often covered by another (read Post 1: What Exactly Does a Palliative Care Specialist Do?). However, palliative care is often realistically practiced by a solo practitioner, such as a physician or nurse practitioner, because a solo practitioner is often considered to be more economical – by those who do the hiring - than a team of experts.
As a palliative care physician, I sometimes struggle with providing the level of spiritual health exploration and optimal spiritual care that I think patients deserve as they attempt to make the most of living with life-changing medical news or health decline - especially since “making the most” can involve trying to find meaning in a radically altered future. I touch upon these struggles in Post 63: 4 Steps to Supporting Your Loved One who Is Praying for a “Miracle” and Post 72: A Sense of Purpose – 3 Suggestions for Regaining It When Illness Has Taken It Away.
Though researchers define spiritual health as being different from existential well-being, spiritual and existential distress are sometimes used interchangeably in medical practice. Spiritual distress may be characterized by a sense of betrayal, sense of loss, anger towards, or doubt about one’s beliefs of something greater, whether or not they be religious.
“I feel like He stopped listening a long time ago.”
“Of course I’m angry. I’m furious. I won’t be a part of my children’s stories! My future grandchildren’s stories! How is that fair?!”
Existential distress may be defined moreso by loss of meaning or purpose in one’s life.
“I still don’t understand why. Why is this happening?”
“I am the provider for my family. If I can’t work and put food on the table, then what is the point of me?”
Regardless of how it is defined, suffering in any of its forms can be detrimental to a person’s ability to find some measure of peace, acceptance, or meaning. It could severely impact one's sense of overall well-being.
So how can we become more aware of, or more concretely acknowledge, our own (or that of our loved one’s) non-physical suffering as we attempt to adapt with a new serious medical diagnosis, significantly declining health affecting day-to-day life, or unexpected prognosis?
The following are questions you could potentially ask yourself (or your loved one) during moments of introspection:
Before major changes in my physical health,
What beliefs, practices, or values helped me cope during stressful times or gave me strength during difficult times?
What beliefs or values guided how I made big life decisions?
What gave my life meaning?
What gave me purpose in how I lived my life?
How did I rely on my spiritual community, my “tribe,” and/or the people I love most to give me strength during tough times?
After my physical health and/or future medical outlook changed,
How have my beliefs, practices, or values changed?
“My faith has gotten stronger. Even if I can’t make it to church, I’m talking to the Lord every day, multiple times a day.”
“I’ve learned the difference between friends who have your back and friends who just want a good time. That’s gold right there, the friends you can count on.”
What beliefs or values currently guide my big personal, professional, and medical decisions?
“If it’s going to be a burden on my wife and daughters, then I don’t want it. I don’t want to be a financial, emotional, or caregiving burden.”
“As long as I can be aware enough to recognize my family, I’ll take whatever’s offered.”
What currently gives my life meaning?
“My faith.”
“My family.”
“My independence.”
“Being able to make my own decisions, whether you agree with them or not.”
What currently gives me purpose?
“Making sure I don't suffer. I want to be comfortable until I die.”
“I need to finish writing this book. That’s my purpose.”
“I want to set things in place so that the kids will be all right, no matter what happens.”
How much support and what kinds of support do I currently receive from my spiritual community, my “tribe,” and/or the people I love most?
“I haven’t told anyone at church about what I’m going through...maybe I could talk to someone.”
“I have people all around the world praying for me.”
“I pretty much keep things to myself. I don’t like having to rely on other people.”
“I have a great support system. I have wonderful neighbors and co-worker friends who drop by to visit or to drop off goodies. I can talk to my partner any time about ANYTHING. If I feel unsettled, I sit outside and pet my dog. I couldn’t ask for anything more.”
And the questions to consider asking yourself (or your loved one) as an initial step in finding help for spiritual or existential distress may be:
What kinds of support do I need right now?
What kinds of support do I want right now?
Whom can I talk to (right now if I were ready) to help me find this type of support?
The answer to the last question may be anyone whom you trust to advocate for what you are looking for without judgment or unwanted advice, such as
- a close family member
- a close friend
- an experienced member of your spiritual community
- someone outside your immediate circle of family and friends who is not in the medical field such as a spiritual leader or chaplain
- someone outside your immediate circle of family and friends who is in the health field such as a trusted healthcare provider, counselor, or medical social worker.
Finally, for those who are trying their best to support a loved one who is suffering, know that sometimes a loved one may not be able to find that measure of peace, acceptance, or new meaning in a completely changed future. They may hold onto their anger, grief, disbelief, or pain for a long time, possibly even until the day they die or the day of their loss.
(Of course, if you were worried about a loved one being depressed, they should be evaluated as soon as possible for a diagnosis and if applicable, medical treatment for depression.)
If this sounds familiar to you, we may have to at some point accept that the best we may be able to do is be as present and supportive as we can be – which may include identifying others to help you with this support - while protecting our own physical health, emotional well-being, spirituality, self esteem, and relationships with other family members.