I’m showing my age, but I remember a song that Blood, Sweat and Tears recorded; it’s the theme song for this post. Part of the lyrics go like this:

“Give me my freedom for as long as I can be.
All I ask of living is to have no chains on me…
And all I ask of dying is to go naturally…”

As a chaplain, I have been a part of many conversations with families over end-of-life care. I know from personal and professional experience that they are brutal. While there are great resources and trained professionals to help and support the decision-making process, there is no way to express the heartaches that accompany it.

2014-06-20 02.31.57The scenarios I have witnessed came to mind as I read a recent news story about the recent death of Diane Rehm’s husband. Diane, a public radio personality, shared the details of her husband’s death by dehydration when his doctor could not and would not help him die faster in his end-stage Parkinsons disease. So, despite the best medical support and symptomatic relief possible, for nine days he refused food and drink, enduring discomfort and pain.

What John Rehm wanted is called “aid-in-dying”, according to the group Compassion and Choices. Diane notes that this is a carefully monitored and controlled action; it is reserved for “mentally competent, terminally ill adults to request life-ending medication from a doctor for a peaceful and painless death. It’s legal in several states, but not Maryland.”

Here is the ticklish part: objections from religious and legislative leaders are based on their belief that this is “assisted suicide” or it is a function of a “death panel” (which, contrary to some pundits’ opinions, do not exist.)

This is a patient-initiated directive. Just as John Rehm decided to stop eating and drinking, it is a carefully considered and though-out plan of action by an individual, and assessed, vetted and supported by a patient’s medical and personal caregivers. It is a difficult designation; those who are eligible for this kind of decision-making make up a very narrow slice of society.

It is not suicide. It is allowing every option, every medical intervention and treatment to be on the table. It is not decided on an administrative level, but on a personal level. It gives patient autonomy new life, if you will, as a patient’s wishes when in a life-ending condition are paramount.

Diane Rehm writes of the difficulty she had watching her husband slowly die. She respected his wishes, honoring their commitment to one another to be there for each other, in every circumstance.

“I wanted to take applesauce and put it in his mouth,” Rehm said. “But you can’t do that. You have to respect someone else’s wishes. You have to honor his desires. And he was finished with life. He said ‘I am looking forward to the next journey’,” she added.

As pastors, we celebrate every life event with our congregants: birth, baptism, confirmation, marriage, and death. We walk with them in some of the most joyful and heart-breaking moments. We bring our tears and prayers, our heart-felt petitions for healing. It seems that to be pastoral and political in this instance, we also must offer prayers for release. We do not look to control the lives of our parishioners, but to support them in the trials and sufferings of this life.

It takes courage and wisdom to walk “in the valley of the shadow of death”. But it is part of the work we pastors do. We need not to shy away from this political conversation, but to pull up a seat at the table and engage with our knowledge of morality, ethics, and the work of God in human lives.

NOTE: The opinions expressed in this article do not reflect the policies or position of the employer or congregation of the writer.

12 thoughts on “Pastoral is Political: “And When I Die”

  1. I truly support the right of individuals to choose the comfort level of their dying process. When one’s life is coming to an end due to illness or injury, why prolong it? Why not allow for a humane end of suffering and enable as much comfort as possible? Thanks, Deb, for articulating this so well and with such compassion and clarity.

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  2. Great article. I have a very nuanced view of this b/c of my work as a Hospice Chaplain in Florida…and b/c of the intense social scenarios that I witnessed there with family members “purporting” to serve their “loved one’s” interest particularly in the case of discussions around “quality of life” and nursing home care, and b/c of staffing shortages, medication issues, multiple doctors, insurance coverage or lack of coverage. Add to that the rapidity of decline and an individual’s processing of death and concern about not being a “burden” and it can get complicated and emotional very quickly.

    On top of that experience, I now have my own husband choosing (up until the very end) *some* life saving treatments even when I was told they could ultimately cause harm (i.e. blood transfusions…he chose NOT to have hospice, but to have palliative measures with the blood transfusions when needed which isn’t exactly the same thing)… Ideally, the patient should “choose,” but sometimes the ideal doesn’t happen b/c of mental capacity changing sometimes more frequently even within a short span of time, doctor and nursing oversight being less than ideal, and the people who should be intimately involved in the decision making having complicated family histories (siblings both intimate and estranged are an example of this). In my husband’s case, it was really important that all the people knew (family and myself included) his final wishes, even when staff disagreed or wanted me to convince him/them otherwise.

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  3. Such a complex issue. I heard part of a Diane Rehm show on this topic last week, and now I understand why she is so interested in it.

    Over and over again I have seen people choose what they believe to be procedures which will sustain and enhance life but in fact merely prolong agony. My father who with my last stepmother could not be persuaded to contemplate hospice for her until it was too late, has a plan to drive to his beloved northern Ontario and take his canoe into the wilderness when his time comes, rather than contend with the medical establishment. (My stepmother’s last days were so gruesome that I cannot yet convince him that hospice could be a good option.) As he becomes older and more frail, I am increasingly imagining the day when he will call and say, “Will you drive me to Canada?”

    Having lost a son to suicide, I find this whole topic extremely painful. But I am clear that there is a wide gulf between a young and physically healthy person beset by depression and despair who might yet look ahead to 70 wonderful years ahead, and a person for whom those 70 years are now behind and who without the support and companionship of those willing to share the valley of the shadow has tubes and wires and bone crushing resuscitations ahead.

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    1. One of the MOST difficult things about my husband’s recent death was the sad fact that we were (as a family) more protected, in some ways, for him to live in a nursing home, than with him at home. Because he had a complicated “open” wound and complicated care, he qualified for regular visiting nurse visits and this was not palliative care. He benefited from these visits immensely (physically, emotionally, etc). He knew from his own interviewing Hospicex2 that these visits, for a certain amount of time, would be reduced by half or more, initially. Because I was juggling working, babies, managing his care, etc, and because he wanted to “help” as much as possible at home, we had to ensure that there was a fairly constant stream of people in the house (meals on wheels, visiting volunteer “helper,” physical therapist, wound care nurse, etc, etc). Ironically, both Hospice interviews told us that they would stop three of these services –the three that my husband needed and wanted most of all– (PT, OT, and wound care which helped provide “comfort” for him), and he would only be seen 1x weekly initially, even with his advanced stage cancer, b/c he wasn’t imminent. I could not take leave from church without throwing all of us into jeopardy…There was a lot of conversation about “family safety” and his desire to live as fully as possible with extra assist which included PT. So my husband elected not to have hospice even when he qualified and I supported him in that decision…(even though I am a huge hospice advocate). It was a fall that sent him ultimately to the hosp. and to the nursing home and another round of decisions and assessments. But, by then, he still did not want Hospice and had built so much trust and faith in blood transfusions to help him that he would not/did not/ “could not” choose otherwise.

      I don’t know, really, if my husband would have chosen a drug to take prior to this. His wishes changed a few times during the course of our marriage, and during his diagnosis and prognosis…and he found it very hard to accept his dying. However, when he was healthy, (cancer in remission), he might have probably chosen such an option, but he resisted having that conversation…

      I, too, find this topic painful. Especially, too, because I live in Maryland.

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  4. Deb, thank you for writing this and for asking us to confront all the realities of our lives and ministries.

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  5. I should be clear that I didn’t interview Diane Rehm – it was an article and a news story featured in my area recently. This topic obviously is so very difficult. It pulls at our sense of fairness, of our attachments to our family and friends, and our fears that “someone will decide who lives and who dies.” But more than that (and perhaps this is another blog post!) I think it touches on our perception of human worth and our desire for autonomy. And the layer of legal, spiritual, ethical and relational complexities are immense.

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