suffering

Jana Pochop on Death and Dying (in song)

R. Horton1 Comment

For most of human history, it was ordinary for families and even close friends to be present for the death of a loved one. People knew the sights, sounds, and smell of death. For a sick person to die alone would be considered an extreme misfortune. But the 20th century moved death from home to hospital. As Philippe Aries wrote, “The hospital is the only place where death is sure of escaping a visibility—or what remains of it—that is hereafter regarded as unsuitable and morbid.” While it was once a great tragedy to die alone, many now consider it a tragedy when one must be present for the death of a loved one.

To be sure, no one who witnesses the death of a loved one escapes trauma. Death is painful, and even those who are prepared for it often panic at the last moment. When people plan to die at home but end up dying in a hospital, caregiver panic is frequently the reason. The last moments of life can be excruciating to watch, and caregivers often call an ambulance to bring relief for their loved ones.

Caregivers who have a home healthcare provider to reassure them do much better. When the family knows the process is normal and unavoidable, they are able to brace themselves against the pain and endure it to the end. The advantage of hospice over home death is that professionals are responsible for all medical decisions, and the family can focus on comforting their loved one, grieving, and saying farewell.

I’ve thought a great deal about this process and how it may improve our society if we once again become familiar with death and dying in a more personal manner. I honestly believe this experience gives people a deeper experience of life, grief, love, and loss. I’ve read about it, and I’ve written about it, but I was surprised to hear so many of my thoughts on the subject expressed in a folk song of just a few minutes.

Last night I went to see a performance by Susan Gibson, an extremely talented singer/songwriter. During the second set, Gibson invited Jana Pochop on stage to sing two songs. The first was about what you will do in the moment when your soul leaves your body. The imagery was compelling and profoundly sad. When this song is available, I would recommend it to help families prepare for the imminent death of a loved one. I also believe the song will be appropriate for a medical humanities curriculum.

I didn’t intend for this blog to ever have anything to do with folk music, but I also did not anticipate folk music intersecting my interests in medical humanities, caregiver narratives, home/hospice death, and survivor stories. The following video is not of the song in question, but it gives you an idea of Jana Pochop’s talents.

[youtube=http://www.youtube.com/watch?v=fnx_lNuyoNA]

How happy should you be?

R. Horton1 Comment

I’ve never considered myself a strict Utilitarian in the narrowest sense of the term, but I always believed that suffering is generally a bad thing and that relieving suffering when possible is morally laudable. I still believe this for the most part, but lately I see myself in a dilemma of sorts. I have rejected all arguments for the necessity of suffering offered by theodicists, for I do not find belief in God to be more plausible based on the idea that suffering is the product of love and mercy from a being who only wants to motivate spiritual development and love for the good in people. I would be more able to imagine a merciful God who neglected to create life at all out of concern that life would entail suffering.

Given the fact that life with its attendant suffering is here (and unnecessary, in my opinion), I find myself agreeing that suffering does seem to be an essential element in developing any sort of moral worth. When I’ve met people, usually quite young, who have never faced financial difficulty, disease, or loss of a loved one, I generally find these people to be underdeveloped. They also seem unaware of the basic truths of life. The lack of suffering in their own lives makes them indifferent to the suffering of others. While most people believe we can’t take all the problems of the world on our shoulders, we also believe it is wrong to be “too happy” in the face of pain and suffering, but it is our own suffering that brings meaning to our experience of the suffering of others. We can never know the pain of others, but our own pain can make us care about what others may be experiencing. I realize some people experience pain and remain stubbornly egocentric, but I believe those who never experience any pain are likely to be incapable of placing any value on the pain of others. At least, they are unable to develop a fully empathic individuals.

All of this is said really to argue against the idea that we should be as cheerful as possible at all times. An old movie asked what is so bad about feeling good at a time when gloominess was trendy. Now, especially in the U.S., we have banished sadness, even when sadness is appropriate. We rush to the pharmacist when we experience the loss of a loved one, the breakup of a relationship, or even more minor life changes. We are attempting to deny the experiences that make us human.

My feeling on this surprises me. When I was much younger, I read many of the existentialist philosophers. I knew then that the brute force of one’s own existence could lead only to anxiety and, in the words of Sartre and others, anguish. I remember now that Heidegger would have us find an authentic existence by contemplating our own death, an experience that pushes the superficial features of life out of our consciousness. Camus would have us constantly justify our existence by defending our choice to not commit suicide every day. For Sartre, the happy people could not be said to even exist in any meaningful sense–just automata going through the motions of life.

When I think of what it means to love or care about someone, I can’t imagine this emotion without pain. (I must add that I wish I could write this without hearing the strains of “Love Hurts,” but so be it.) We love our parents, our children, and, of course, our lovers, and each relationship is laced with deep pain, fear, worry, and uncertainty. The joy we get from these relationships can’t possibly outweigh the pain, but we find it worth the effort. Perhaps the pain intensifies the joy. It may be that the more pain we feel, the more we love. The more we love, the more we care for others. The more we care for others, the less pain we hope they will feel.

I’ve led myself to a paradox I cannot resolve. And I feel vaguely peaceful about it.

The Ethics of Medication

R. Horton2 Comments

Yesterday, I went to the doctor, and he prescribed medication for reflux disease. When I went to pick up my prescription, the cashier told me the pharmacy could not fill it until they received authorization from the doctor. I asked whether the doctor’s prescription was not authorization. It turns out, according to the pharmacist, that the insurance company will not pay for the medication without a written justification from the doctor.

Rather than needing doctor’s authorization, the insurance company was rejecting his authorization. So, I get no treatment for my reflux, which hardly seems fair, but the situation is exasperatingly complicated.

It could be that my doctor, under the influence of pharmaceutical reps, prescribed an expensive medication that is no more effective than cheaper alternatives. If so, it may be in the best interest of everyone, except the doctor and pharmaceutical company, to reject payment for an expensive medication that offers no additional benefits over other medications. Praise to the insurance company for holding the line on costs.

It may be that the doctor knows that the new and expensive medication is more effective and has fewer side effects than alternatives. He may have prescribed what he feels will promote my health and healing better than any other treatment available. In this case, all thanks go to my doctor, and the insurance company is really quite evil.

Or, it could be that the insurance company rejects any expensive treatment with the hope that patients will give up and find cheaper treatments or go without treatment. This, of course, might save money in the short run, although rejecting claims costs money in itself. Sometimes, rejecting a claim is more costly than simply paying it. the amount of staff time and resources tied up on this one prescription is enough to give one pause. The pharmacy says the insurance company won’t pay for the prescription, but I did not press them on how they know this. It is possible they simply consulted a list of preferred medications. It may be that they checked a computer database. Or, they may have actually made a phone call. Any of these options require employee time.

After determining that the drug was not a “preferred” drug, the pharmacy faxed a form to my doctor. If things go as planned, a member of the doctor’s staff will obtain a statement and signature from him before completing the form and faxing it back to the pharmacy. This is an inefficient system at best.

In this case, the patient, me, is going without treatment for reflux, which is causing real problems and can lead, if untreated, to serious problems such as esophageal cancer, which frequently terminates in death. So, who is to blame for the suffering of the patient? Greedy pharmaceutical companies? Doctors under the influence of greedy pharmaceutical companies? Greedy private insurance companies? Or pharmacists who raise problems when there is no problem? I really don’t know the answer.