Presenting at AAHPM with a panel of wonderful educators and providers about spiritual pain.
73 yo woman with COPD, osteoporosis, HTN, CHF, obesity and obstructive sleep apnea. Admitted to the hospital with shortness of breath and chest pain, R/o MI- 3rd hospitalization in 3 months, last time was discharged to SNF for rehab and she was readmitted 5 days later. MI has been ruled out but there has been elevated troponins thought to be due to demand ischemia. She has a 42-pack year history of cigarette smoking. She is a full code.
She lives alone, has been widowed 17 years, has 2 dachshunds and a daughter in Oregon who works full time. She has little involvement in the community now, her disease has isolated her. She retired at 65 after many years working as an executive secretary. She tells you how much she liked her work and interactions with both clients and the public. She was diagnosed with COPD and CHF about a year after she retired which is when she quit smoking. She lives in her own home and has been getting by with help from a neighbor. She confides in you that she’s afraid that she will fall and wonders what she will do then.
Her husband died in a car accident when they had been married 32 years. She went to some bereavement counseling at her local church but didn’t find it very useful. She was raised Lutheran and while she married and raising children, the family attended church but participation fell away as everyone grew up. She states she believes in God. When asked how she copes with her disease and limitations she admits she just tries not to think about it. She doesn’t want to see the chaplain
As you look at her you notice she has trouble speaking a whole sentence without stopping to catch her breath. You note how drawn you are to her breathing when you enter the room. She is upright, on the edge of the bed. She moves the tray table back and forth, trying to fix its position in a way that will let her reach her water but she doesn’t seem to be able to make it right. Her skin is pale, dry, and thin from years of steroids. Her nails beds a bit dusky and clubbed. Her legs are edematous. 3/4ths of her lunch sits on her tray. With a bit of questioning she admits that she fell a few weeks ago and that her back has been hurting. Her doctor told her that she has osteoporosis. She takes Tylenol but that doesn’t help.
You start goals of care discussion after asking if she wants her daughter called. She says no. You ask her what she’s hoping for and she says “ I don’t know” Probing a bit further, she starts to talk and states that she is tired of pain and worries that she doesn’t have long to live. She tries to ignore her increased shortness of breath and she confides that she has been frightened living alone. She is afraid of dying alone and in pain. You ask if she would like to see a chaplain and this time she says, “I’ll never forgive that pastor for what he said to me when my husband died. “
You prescribe medications for dyspnea and research the usual avenues for chronic osteoporotic back pain such as kyphoplasty, physical and occupational therapy and muscle relaxants. You consider agents for neuropathic pain and wonder about antidepressants for both pain and her seeming depression but you know there’s no quick cure. You decide to start cymbalta.
The next day she is uncomfortable appearing, restless and grimacing. She has refused roxanol so you change the order to low dose IV morphine scheduled with parameters to hold for decreased respirations and / or sedation. She doesn’t want anyone to call her daughter and says she’ll do it in the next day or so. She states she doesn’t want to be a burden as her daughter is a single mother and works long hours. She confides that they haven’t been as close since her husband died.
You notice she is more restless, picking at things, and unable to focus. At times, she’s irritable. Her oxygen sats a bit lower now and there’s evidence of worsening respiratory failure. She needs bipap at night but it makes her claustrophobic and she pulls at the mask. Labs are unremarkable.
The next night, she falls in a restless attempt to get to the bathroom.
The nurses are giving her the morphine every 3 hours and think she needs it even more often. There’s talk about putting her on a drip. You also now feel compelled to talk with the daughter who is confused and says, “I don’t know what has happened, this is nothing like my mom”.
You want this woman to be comfortable, but you remember the perky woman who was admitted 5 days ago and wonder how she got here. There’s been a nagging sensation that something has been crying out to be discussed, but it’s been hard to identify. You wonder what you might have done differently
the story acts as a container. It gives a framework for how to work with a patient. They tell us things verbally and nonverbally, by what is said, unsaid, a look across a room, a pause.. The list is endless and a lot of what we know about people is due to our own experiences. it takes a special person to work with those who suffer. And it takes someone who is willing to explore themselves so as not to transmit their ideas and opinions onto another and run the risk of losing a chance to connect.
Many times it seems as though, in the bustle of modern day medicine, especially hospital medicine, the story gets abbreviated, assumptions are made, decisions are made on those assumptions. We can measure our productivity by what we order, what symptom we've uncovered, what treatment we will try. And yet, in spite of our best efforts, all the medicine in the world cannot relieve some suffering if the emotional and spiritual components are not acknowledged. This presentation is to help us all identify spiritual pain during physical crisis that could lead to an amplification of symptoms if left unchecked. Why? because we are more than the sum of our parts.
Pain insists on being attended to. God whispers to us in our pleasures, speaks in our conscience but shouts to us in our pain. It is a megaphone to rouse a deaf world.
(C. S. Lewis: The problem of pain)
Meaning- What would this patient answer if asked about meaning right now? She was an executive secretary with a prominent business in her town for many years, probably knew everyone and was quite involved. Now she’s homebound and likely is visited most by the neighbor who helps her with chores. What gives her a sense of purpose right now? What gives her direction? Does her suffering define her?
Relatedness: She has a distant, perhaps estranged relationship with her daughter since her husband died. Is this an issue for her and does it affect how she feels connected? Does she feel connected to anyone? Perhaps in the hospital she feels connected to her palliative care provider or a member on the team? What does that mean and how do you mange that with integrity?
Hope: The loss of hope is the most distressing of spiritual pain and the most difficult to uncover. Does she feel hopeless in her situation? What does she hope for now? “ Do I trust what the future has in store for me?
Does she need time and space and ears to witness her journey as she transform her own hopelessness into a place of hope? Remember what we hope for can be constantly changing and hopelessness at end of life is not absolute. Most people have resilience.
Forgiveness: Who does she want to forgive? She had an angry reaction at her church community but perhaps more importantly is she angry at herself for smoking cigarettes? She might feel she deserves to be sick and feel guilty as well. She might need the space to allow herself her own humanity, full of frailty and pitfalls, just like the rest of us.
Forgiveness is an invitation to redeem failure- Doris Donnelly, Learning to Forgive.
Few choose the work of healing. It is daunting to journey into the depths of soul,
To find places of suffering and
bring it to light.
It is the work of divinity itself.
Are you willing to pay the price?
Berach of Cannaught, 6th century
Much soul pain is reached and healed by the way care is carried out. Most people, given space by recognition of their worth as unique individuals and accompanied by an effective palliative care team, will draw on their own strengths and resources and reach a resolution of their inner pain. Dame Cicely Saunders