Guest Commentary: Lawmakers, please don’t punt on End of Life Options Act

My mother was mentally sound until the last six days of her life, when she slipped into a comalike state. During her last two months, she had no quality of life and a great deal of pain, even while receiving hospice care. The pain medicine was helping her, but even increasing or changing the dosage did not relieve her pain when we had to roll her, bathe her or move a limb for any reason. She would moan. I can still hear that moan. And her breathing became difficult, as her lungs were filling with fluid. Even in hospice, she, like many of my patients, did not have a peaceful or gentle death.”

Diane Kraus is a resident of Millsboro.

I am dying of metastatic stage 4 breast cancer. I will not die today or tomorrow, but that day is soon approaching. Tests revealed innumerable tumors in my lungs, liver, lymph nodes, bones, skull and brain. I have had whole-brain radiation. Now on my third round of chemo, I have a better potential for being alive in six months because most of the tumors are no longer active.

But I continue to get weaker. I have lost 40 pounds from cancer and chemotherapy treatments. I am nauseous, constipated, have severe daily headaches and bone pain in my back and head. The radiation left me with blurred vision in my right eye and very loud ringing in my right ear that limits my hearing. The chemo has left me with neuropathy in my fingers and toes.

But I continue to fight to spend as much time as I can with my 29-year-old son. I know my bone and brain tumors are highly likely to cause me to suffer from intense pain at the end of my life. I have seen how the end of life can be so painful, even on hospice and medications.

In fact, the use of hospice care among Medicare recipients has more than doubled over the past two decades. Yet studies estimate that nearly 70% of cancer patients who receive low doses of opioids to treat background pain (pain experienced for more than half the waking days during the previous week) still experience severe bouts of breakthrough pain.

That’s why I testified last month in support of Delaware’s medical-aid-in-dying bill, The Ron Silverio/Heather Block End of Life Options Law (House Bill 140), released two weeks later by the House Health & Human Development Committee.

If you have ever sat for hours with a dying patient, you know how difficult it can be for the patient and the family. I come with a vast knowledge about the dying patient. I worked for 35 years as an occupational therapist and for 23 years in home care and hospice. I took end-of-day/night care of my mother, who also had metastatic breast cancer.

My mother was mentally sound until the last six days of her life, when she slipped into a comalike state. During her last two months, she had no quality of life and a great deal of pain, even while receiving hospice care. The pain medicine was helping her, but even increasing or changing the dosage did not relieve her pain when we had to roll her, bathe her or move a limb for any reason.

She would moan. I can still hear that moan. And her breathing became difficult, as her lungs were filling with fluid.

Even in hospice, she, like many of my patients, did not have a peaceful or gentle death.

Similar to the time-tested, 26-year-old Oregon Death With Dignity Act, there are more than a dozen safeguards in the Delaware End of Life Options Law, including:

• Two health care providers must confirm that the person is terminally ill with a prognosis of six months or less to live (the same requirement for hospice), mentally capable of making an informed health care decision, physically capable of self-ingesting the medication and not being coerced.
• The attending health care provider must inform the requesting individual about all of their end-of-life care options, including comfort care, hospice and pain control.
• The individual must make two separate oral requests for the medication, with a 15-day waiting period between the first and second oral request.
• A written request is also required. Two people must witness the written request, one of whom cannot be a relative or someone who stands to benefit from the person’s estate.
• Individuals are not eligible for medical aid in dying based solely on their age or disability; they must have a terminal prognosis of six months or less to live.

Please respect the desires of nearly three-quarters of Delaware voters (72%) who support medical aid in dying; don’t allow the 20% who oppose it to determine others’ bodily autonomy. This decision should be mine.

In addition, a 2022 survey found that nearly 3-in-4 Delaware physicians (74%) support medical-aid-in-dying legislation.

Support this compassionate legislation for people like me, our families and for the right to make our own decisions about our health care. The time to pass the Delaware End of Life Options Law for terminally ill residents is now. We cannot risk waiting for lawmakers to act. We could die with needless suffering before they act.