Comorbidities, Faith, and Decisions

For the fourth time (and the second time this year), I was privileged to be a part of a loved one’s transition from this worldly life and support to the family left behind. Being the intellectually curious person I am (and given this blog’s name), I found, in all four experiences, moments of distraction. Opportunities to set aside the realities of what all of us were feeling and experiencing and instead focusing on individual articulations, faith, and actions. 

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Who and Where

While only an infinitesimal fraction of what hospital staff, clergy, and many others have experienced, my four experiences make up my entire universe. Its all I have to go with. Three were in the U.S. Two were seniors (over 75) while the other two were under 40. One was Christian, the others Muslim. Three had long term serious underlying causes; they had visibly suffered for most of the years that I had known them. All four passed in a hospital, under the care of experienced, professional, and compassionate medical personnel.

What do I think

These staff see, on a daily basis, the physical, spiritual, emotional, and intellectual process that a family is forced to go through. They observe it from a distance, trying hard as a professional not to get drawn in, but, at the same time, struggling as a human being. Is it easier for them to observe the older ones? The older two I knew had lived a full life, they seemed at peace. Their time had come and they were ready. They knew what they wanted and they had control. They said their goodbyes (even waiting patiently for the latecomers), and both embraced their unification with God. I think the staff sensed the individual’s and family’s peace, acceptance, flashbacks of pleasant memories, quiet conversation, and gratitude. Gratitude both for the person’s life and their soul’s onward journey.

The younger two were different. I think they resented their life-long conditions and did not want to die. Neither did their families. They had to make difficult decisions. Naturally, there were different opinions but there could be only one decision. Each family member’s opinion, as I saw them, hinged on where the family member was in the continuum that began with hope.

Hope

In the Intensive Care Unit (ICU), before the soul’s departure from its body, the family is initially and naturally steeped in hope. I believe hope is our primary defense from grief and pain. We all clinged onto hope of recovery, even those like me who think with our heads much more than our heart. The measure of hope could be a drop, a pond, or an ocean; it waxed and waned over the minutes and hours; it pivoted sharply with the patient’s breath, gasp, or grip. We clinged to that belief, be it big or small, that our loved one will walk out of the hospital. 

For those with both drops or volumes of faith, God was a focal point in this step. Hope (and prayer) are massive anchors in this time of need when all you really have is yourself and your thoughts. Yet, as some of us turn to God and pray, we should understand that faith is harder for someone with long-term underlying conditions or the younger patients. Yes, miracles can and do happen. We may know of those that deny death. They walk out of hospice, having been diagnosed with strokes, heart and kidney failure, but no longer needing medication or dialysis. For those with faith, these miracles are ascribed to God and in turn feeds more hope and confidence in prayer. 

But I wonder how many of those types of miracles are ascribed to those that had long-term serious issues or were over 75. The 2020 pandemic taught us more about comorbidities. 

Certainty

But if your loved one is not destined for that miracle, for whatever unfathomable reason, we may proceed on the continuum to certainty. It can take over our essence slowly or quickly depending on the tension between gut and brain. As we pull ourselves tot his next step, we focus on remembering the cherished moments. Yet, we cannot forget the health conditions—the pain, and suffering that was endured. Hope and certainty are not binary light switches. They are more of a phased dimmer switch with surges. We get surged with waves of hope, again. We question and question and question. What if they had done this? What if we had done that? What if the doctors made a mistake?*

Decision

At some point, if it has not already happened, the family may have to make a decision. For me, the two elder ones had made their own decisions and communicated them unequivocally. Yes, people may have DNRs (written instructions on a legal document saying “Do not Resuscitate”). But in my opinion (and after all, this is an opinion blog), these instructions are much too superficial. They do not necessarily distinguish between the nuances of death and modern medicine, of hearts and brains. One could be kept on life support (artificial food, medicine, and ventilation) for days and even years if my heart is strong and working. I may never need to actually be resuscitated.** But does that reflect what they want or what their family wants? What happens if one family member wants one thing and the others want something else?

In two of my experiences, the family had to make the impossibly difficult decision of stopping life support. Both patients were under 40 and had always had serious underlying medical conditions. But they were in different cities, states, and decades, had different families and underlying conditions. But both were the most heart-wrenching, traumatic, and impossible decisions I have ever witnessed. For those that have not had to experience this process, in a hospital room, the patient is given pain medication and remains hydrated on a drip. Food, water, medications, artificial breathing, or breathing assistance are stopped. They may still have a capula that delivers a higher concentration of oxygen to the nasal opening, but the patient has to inhale in of their own accord. 

Waiting

The displays are turned off (the nurses station has a live feed); the lights can be dimmed; the family is left alone. They may pray aloud, sing devotional literature, talk, or even play the patient’s favorite music. Or they can wait in their own individual thoughts. The hospital may deliver food and coffee at the onset. Then the family is left alone. A resident may come in occasionally, respectfully, to check the patient, adjust something, or deliver more pain medication. 

People always ask, how long? Unfortunately, no one knows. It all depends on the patient, their resilience, their determination to hang in here longer, or their willingness to transition to the hereafter. It could take a few minutes (20 in my first experience) to a few hours (10 hours in my second) or a few days. I think, given all that has happened and will happen, this is the hardest phase. The longer it takes, the more you doubt, challenge, revisit, and question. But at that point, it is out of your hands. 

Grief

When it actually happened, I felt initial feelings of calmness, gratitude that the suffering and pain is over, exhaustion (sitting at the foot of the bed for 10 hours) can be physically and emotionally exhausting, and, of course, grief. Quiet, internal sobbing or audible crying. Again, prayer offers a focal point, a pillar of strength. We all grieve and process in different ways, we learn from each other, and that is what makes us both human and humanity. After all, God says:

O humanity! Indeed, We created you from a male and a female, and made you into peoples and tribes so that you may [get to] know one another. Surely the most noble of you in the sight of Allah is the most righteous among you. Allah is truly All-Knowing, All-Aware. (Qur’an 49:13) 

Just as a body, though one, has many parts, but all its many parts form one body, so it is with Christ. For we were all baptized by one Spirit so as to form one body—whether Jews or Gentiles, slave or free—and we were all given the one Spirit to drink. Even so the body is not made up of one part but of many….But God has put the body together, giving greater honor to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honored, every part rejoices with it. Now you are the body of Christ, and each one of you is a part of it. (1 Corinthians 12:12-27 NIV)

Rituals and Form

Then come the mechanics (arrangements, paperwork, etc.) and rituals of the funeral, burial, services, and prayers that all depend on the person’s faith. But does it really depend on their faith? I believe it’s a blend, a tussle. We end up partially respecting our departed loved one’s wishes about their last rites, but paying close attention to the decision-makers in the family. When asked, I lean more towards what gives the family closure and peace. If there is a significant conflict, perhaps the family should win? After all, they need intellectual and emotional closure and peace. If my family says, “we know Galeeb wanted to be cremated but the entire family wants him to be buried as a Muslim with the traditional Muslim prayers and we will happily live with the decision that we overrode him” then all the power to the family. After all, I am not around to experience my own physical interment.

What Do I think

I titled this post about faith and have only touched on the presence of God in this transition. I also started with the hospital staff’s experience but did not elaborate. Here goes…

Hospital Staff

All four experiences have left several scenes saved to my organic data storage. One was the tear-filled eyes of an overnight hospital resident nurse after the patient had transitioned from this physical world. I noticed her tears when I approached the nurses station with a question. I knew, given her actions, words, and the number of patients that this particular ICU catered to daily, that this was not her first transition. Throughout the night, she had remained calm and compassionate, attending to the patient while fully respecting the emotions and mindframe of the family gathered around the bed—politely squeezing around one of us to adjust a pillow or check on a gauge instead of asking us to move. 

Yet, here she was, visibly shaken and stirred. I will never know if her tears were coincidental to our lived experience or something completely unrelated, only coinciding in time. But an hour later, as we prepared to leave the hospital, for the final time, a void among us, she approached us with a gift. A set of small vials, each capped with a red rubber stopper. Not filled with that precious red liquid but a small piece of paper. A physical print-out of our loved one’s heart beat. A small gift, she said, that she gives to all her patients. Presumably, only the ones that did not walk out of the wing. 

The mix of physical tears, emotional sensitivity, compassion, and a parting gift revealed the silent, constant negotiation between duty and humanity that drives health care workers. I briefly remembered the 7pm applause in cities around the nation during the COVID pandemic lockdown. Strangers applauding not stage performers, singers, or athletes, but the real heroes, the health care professionals that sacrificed their lives while reminding themselves that human feelings could not be swept fully under the carpet as they dealt with their day jobs.

Faith

Lesley Hazleton says

“Abolish all doubt, and what’s left is not faith, but absolute, heartless conviction… in short, the arrogance of fundamentalism. This isn’t faith — it’s fanaticism.” 

I fully comprehend and even endorse those that seem to have abandoned their faith because of overwhelming doubt. Those that have serious underlying issues, including those I bade forewell to as they transitioned to the hereafter, did not have faith in the presence of God or in organized religion. After all, in Islam, God is supposed to be the Compassionate (Rahman) and the Merciful (Rahim). Both come from the root R-H-M ر-ح-م which indicates mercy, tender care, womb, and nurturing love. If God is supposed to be so compassionate and merciful, and if he is omnipotent and powerful, why do some of us have serious, underlying, terminal conditions that do not let us experience a 40th birthday? 

Two of God’s responses:

Be sure we shall test you with something of fear and hunger, some loss in goods or lives or the fruits (of your toil), but give glad tidings to those who patiently persevere, who say, when afflicted with calamity: "To Allah We belong, and to Him is our return". (Qur’an 2:156-157)

Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything. (James 1:2-4 NIV)

Why should you care

I hope that you never have to be present, in both mind and body, while a young loved one, with underlying, serious conditions, transitions out of this world. Where you have to play a role in making a decision about that transition, or where you have to support those closest to the patient. If you are find yourself in this context, please understand, appreciate, and even condone their wishes, interpretation of faith (or doubt or absence of faith) because we are all different. One without such a condition can never, ever fully understand or appreciate the other’s life. 

notes: 

* for a personal perspective as a juror on a civil rights case related to this topic, please see one of my published books, available on many ebook stores.

** I encourage adoption of a complex DNR document. That helps your family in a situation where they are forced to make a difficult (impossible) decision. It should also give you peace of mind where you may not want to be kept on life support.