When Death Would Be Kinder, Allow The Option
At 45, Jennifer Holm has two life-threatening illnesses. There is no cure for either, no clinical trial she can qualify for. The married mother of a college freshman is on three types of chemotherapy. But they seem no match for the carcinoid neuroendocrine cancer and progressive, multi-systemic sarcoidosis, which require daily medications and injections in her spine to block the pain.
(Photos: Rekha Basu)
The meds make her hallucinate, yet at times Holm feels as if she’s been shot through the stomach. She is nauseous all the time and has to be on anti-depressants.
The symptoms began when she was 39 and a program manager at Iowa State University. Today she runs a support and awareness group, Iowa Carcinoid/NET Cancer Connection. On Jan. 27, she addressed an Iowa Senate subcommittee considering a bill to allow terminally ill adults access to life-ending medications. Holm said she had made peace with dying when her quality of life is too compromised. It’s the cruel indignity of what will likely happen before death that she can’t accept.
“As these illnesses spread throughout my intestines and abdomen, (they) will eat through my abdominal wall, creating holes across my abdomen, sides, and back,” she explained, “allowing the contents of my intestines to spill out.” To put it bluntly, bowel would ooze out uncontrollably. And because the disease is also gnawing at her bones, she would be too fragile even to walk to the bathroom. It would fall to her husband and son to deal with the consequences. “I do not want my family to remember me like this at the end,” Holm testified. “I want them to not remember me as a tortured shell of my former self. … There are things worse than death.”
There were tears in the hearing room, but Holm had not come seeking pity. What she sought was the simple right to say “no more,” when her condition becomes unbearable. Under Iowa law, you can’t legally obtain the means to end your own life, even when its quality is so gravely compromised.
But within weeks of her testimony, the bill’s sponsors let it pass the deadline without taking a vote to move it to the full committee. Members had been lobbied hard by religious groups claiming it would lead to copycat suicides and send the wrong message to teen-agers.
There are good reasons to be cautious about life-ending medicines falling into the hands of people who are temporarily depressed and suicidal. But such precautions were taken in the Iowa Death with Dignity Act proposed by Democratic Sens. Joe Bolkcom, Rich Taylor, Matt McCoy and Dick Dearden. It would only have applied to terminally-ill adults facing six or fewer months to live. A patient would need to be diagnosed by at least two physicians, make two oral requests two weeks apart and a written one witnessed by two people who met certain qualifications. The patient would have to be physically capable of taking the medication.
Now Holm, whose husband Dan is a Register reporter, is considering suing the state for interfering with her right to die with dignity on religious grounds which she, an atheist, doesn’t share. And John Tapscott, a terminally ill former state legislator who also testified in favor of the bill, is considering joining her. Tapscott, 86, testified he has cardiac amyloidosis, which forces him to be on oxygen all the time, and unable to bathe or dress himself.
Five states already allow medical aid in dying. Various national polls show a majority of Americans support it.
There was other moving testimony last month. A hospice nurse from Cedar Rapids with Stage 4 melanoma said if her tumor returns she doesn’t want to suffer a slow and painful death. A home health care director in Ottumwa said she had worked in the state of Washington, where patients are “able to write their own ending,” and that had replaced fear with empowerment.
Rep. Brian Meyer, who last year introduced an Iowa House bill to the same effect, testified that his mother died of lung cancer after wasting into a shell of her former self. “I know if she was given the opportunity to die peacefully the way she chose, she would have taken that opportunity.”
Meyer said his bill brought more positive response than any other legislation he’s been involved with. But he said religious and conservative opponents badly misrepresented it online, some calling it assisted suicide.
Bolkcom, who chairs the Senate subcommittee that recently failed to move the bill forward, says it wouldn’t have had enough votes in the full committee, or in the Senate, to pass. He said more education needs to be done to overcome what he calls “pretty significant opposition” in the community. He has scheduled a subcommittee meeting March 3, where he hopes advocates will make their case again for passage next year.
Illegal or not, as we saw recently in the tragic death of David Hurd, when people’s lives become intolerable, those intent on ending them will find ways — even extremely traumatic ones — to do so. The state has no business forcing someone to stay alive whose quality of life is so comprised that the infirmities outweigh the joys.
It takes courage to do the right thing in the face of controversy. This was a missed opportunity to show that.