Rest in peace, John McCain

Rebecca A
Rebecca A
Sep 2, 2018 · 5 min read

On Friday, August 24, one day before John McCain died, his family released a statement about a change in his “goals of care,” as we say in the health biz, though it wasn’t quite worded as such. Here’s part of it: “Last summer, Senator John McCain shared with Americans the news our family already knew: he had been diagnosed with an aggressive glioblastoma, and the prognosis was serious. In the year since, John has surpassed expectations for his survival. But the progress of disease and the inexorable advance of age render their verdict. With his usual strength of will, he has now chosen to discontinue medical treatment.”

I understand what the McCain family was trying to tell us —that he was no longer a candidate for chemo, or radiation, or surgery, or any intervention intended to prolong his life, and that 911 would not be called when his heart stopped beating. I think this had likely been the case for months, and by my assessment, he’d been medically “hospice appropriate,” a term used often in my workplace, since at least April, when he was hospitalized for an intestinal infection. Ultimately, the words used in the statement are plainly inaccurate, as care that is not “curative” — palliative and hospice care — involves treatment of the medical symptoms of dying, which can be numerous and fierce.

I am sorry for their loss. I also remain angry and disappointed, and not only because of the way his political legacy is being portrayed. I am stewing about the way his illness and death have been discussed, both by the McCains and the media. A few months ago I wrote about what we miss when we talk about a person’s “fight” against their disease, especially in our pitifully tiered and dangerously racist healthcare and social welfare systems, especially when a person’s disease is as debilitating as an aggressive brain tumor, and especially when a person is a very powerful and rich lawmaker whose bodily decline is being covered in the news. We miss the fact that since his diagnosis, despite the failures of the blameful systems he himself has been integral to crafting, John McCain always had access to the care and support he needed.

Often very sick people diagnosed with glioblastoma, the same cancer that afflicted John McCain, will come to die at the hospice facility where I am a counselor. Recently I spoke with the wife of a patient in his late 30s who described how unsustainable and unrealistic it had been to rely on different family members, siblings and nieces and nephews and teenage children, to rotate caregiving duties while she worked. Intent to have her husband die at home, she had arranged for in-home, private-duty care, an out-of-pocket expense to add to the “supplemental” nature of home hospice, which covers in-home clinical support for just a handful of hours per week. Even then, the nursing assistants couldn’t administer medication, and to hire an RN or LPN was cost-prohibitive. In the months since this young man’s diagnosis he’d been alternating between bouts of crying and lashing out at loved ones, which I suggested was a combination of his emotional response to losing his life so viciously and the physical consequence of tumors pressing into his brain, validating her understanding of the chaos. His admission was initiated because he’d been crying and yelling out in pain and clearly needed a physician to closely monitor and regularly address dosages of his medications, something his wife had been trying to do on her own through regular panicked phone calls to the nurse.

When symptoms are responded to adequately, dying can be a peaceful, managed process, and still it is uncomfortable, because the natural effects of death involve social withdrawal, agitation, increased sleeping, and decreased appetite. These can be very distressing for family members to witness and experience, and hard to distance from; people often express it’s most difficult to let go of the eating. People dying of common illnesses, like cancer and COPD and end-stage renal disease, eventually fall into a period of time I’ve come to gently describe as alive but not awake, what was once referred to by a colleague as the cliff, when a person is sleeping as they’ve never slept before, sometimes with eyes a quarter open, breathing with congestion and periods of apnea, most often for a day or a few days. Family members in disbelief during this phase, who think the analgesics are causing the nonresponsiveness in their loved one, are able to request Narcan; a few times I’ve seen patients withstand this without a flinch. At the very end, the neck bends back in submission. I’m certain that like many others, as he lived through this process, John McCain’s medications were benzos and opioids. There’s currently a national opioid shortage due to regulations enacted following cursory national acknowledgement of our country’s ubiquitous chemical dependency crisis.

Recently my friend Ron died of cancer that had metastasized to his brain. Though as mentioned above I’m opposed to the terminology around the “fight” against a disease, Ron, a few decades younger than John McCain, put his body through as much invasive treatment as doctors would prescribe, ending with whole-head radiation to slow the growth of more than 20 masses in his brain and eke out a little more life, as much as he could get. He finished radiation a few months before he died and then was cared for with in-home hospice supports and the effort of his wife and family.

I cried continuously at Ron’s memorial service, as he had planned his own gorgeous farewell. His sister and brother-in-law covered “All Things Must Pass” and John Mellencamp’s “Longest Days” on guitar, with harmonies, and multiple family members and friends gave speeches describing memories Ron had instructed them to share with us all. With Ron’s guidance a friend had designed a glossy program filled with his likes and dislikes and a short biography and photos. His wife hardly wavered at the podium as she testified to the trajectory of his work, passions, and relationships, as well as his years-long path of enduring hospital-based cancer treatment and the therapeutic presence of the hospice staff who came in during his last weeks to ease the burden of his exit. The ceremony ended tearfully with a segmented slideshow, a toast, and the recorded version of “Seasons of Love.”

Like Ron, John McCain pursued every life-prolonging treatment option available to him and had a heavy hand in planning his final arrangements. According to this NYT story, it was April — also the month of his last hospitalization — when McCain asked former presidents Obama and Bush to eulogize him. Since he died the focus has been on how he managed to separate himself from President Trump, despite the fact that they are mainly separated by Trump’s disrespect, not their policy stances and impact. McCain’s cancer was always going to lead to his death, and he had enough time and foresight to beat the timing of his symptom burden and plan for how he wanted to be remembered. If only he’d truly differentiated himself from his party and used his power to draw attention to his healthcare system experience. Some of the boldest truths are in the challenges of living with and dying from an illness like his.

Rebecca A

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Rebecca A

emotions, social work, anti-racism, systems change, accountability