By Chris Haring
As part of comprehensive end-of-life care, hospice can offer patients with terminal illnesses additional dignity when paired with medical aid in dying
When it comes to our final moments, shouldn’t we all have the right to decide how we die? As we navigate life’s closure, our ongoing conversations about end-of-life options can profoundly impact that inevitable final moment (and the surrounding days and weeks).
In an August op-ed for the Los Angeles Times, Letters Editor Paul Thornton shares a poignant account of his mother’s fight with cancer, leading up to choosing a transition to hospice care. Amidst the tragic circumstances, his narrative resonates deeply with the values of the Death with Dignity movement, underscoring the importance of preserving autonomy and compassionate care in the face of terminal illness.
Thornton’s mother endured surgeries and treatments in a relentless fight against brain cancer – one driven by the hope of a cure or, failing that, a few more cherished moments with loved ones – amidst the whirlwind of hospital noises and the beeping of machines.
When, sadly, scans showed that the doctors’ best efforts were not producing the desired results, she indicated wanting to transition to hospice. Soon, the tranquility of home replaced the cold and sterile stressors of the hospital, and the focus shifted to a nurturing embrace of life’s simple joys.
Another feature of hospice care is that it can also serve as a bridge between aggressive medical interventions and alternative options for end-of-life care, including medical aid in dying. The synergy between the hospice practice and the Death with Dignity movement becomes evident when considering their shared principles: a 2022 study from the American Geriatrics Society showed that 87% of qualified patients accessing assisted dying were also enrolled in hospice care at the time of their deaths.
Increasingly, conversations about advanced directives and end-of-life wishes are becoming more common, and Thornton’s story underscores their potential impact. Although she was not one of the thousands of Americans who have chosen physician-assisted death, comfort became paramount in his mother’s final days. And amid the sorrow, Thornton said there was solace in knowing that his mother’s own choices helped pave her final path.
Read the full article below:
Opinion: A good death on hospice for my mom after the horror of brain cancer
Published: AUG. 19, 2023 3 AM PT
My brother’s text the morning of Aug. 2 was urgent: “Her breathing has just now shifted. … I think we’re closer, not there but closer.”
Our mother was dying, but not in the gradual way she had been since her brain cancer diagnosis in May. This was “active dying,” the end-of-life phase where breathing and circulation rapidly slow until they cease.
My brother was with nurses at our mom’s bedside, sending updates as I raced in from my home in Alhambra. He knew the end was near because our mom had been on hospice care at her home in Glendale for a week, and the nurses who performed daily checkups had explained to us what we might see as death approached.
The hospice experience was starkly different from the previous three months that our mother, a highly regarded nurse working in a prenatal clinic at Los Angeles General Medical Center, spent in the hospital undergoing treatment for the cancer. She had endured surgeries, infections, tube feeding and chemotherapy, in hopes of a cure or, failing that, a year or two more with her grandchildren.
Tragically, that hope would go unfulfilled. The day after her final scan showed that treatment had failed, our frail mom indicated with the hand squeezes she used to communicate with us that she wanted to go home.
That night, after many tearful goodbyes with doctors and nurses on the oncology ward and a logistical sprint to make her living room fit a hospital bed, my mother went home.
She was dying. But the week ahead would be her best in months.
Gone were the noisy IV pumps and blood pressure cuff intermittently squeezing her arm; in their place was morphine and the quiet company of loved ones. Visitors came and went, without the hospital’s mandatory security check-in.
Nursing colleagues streamed in to pay moving tribute. My children stayed for hours at a time, free to move indoors and outdoors. The pastor from our old Lutheran church brought over her service puppy-in-training and read from the Bible.
Though still bedridden, my mom regained some freedom at home. Having lost the ability to swallow, she was under a “nothing by mouth” order at the hospital. But on hospice, no one objected when I swabbed a few drops of her favorite drink onto her tongue. It was “medicinal Diet Coke,” I told a nurse.
This sense of freedom and improved quality of life is typical in terminally ill patients when the goal of care becomes comfort. “When we’re no longer focused on the disease, we’re focused on the patient,” said Betty Ferrell, a pioneer in hospice and palliative care medicine who directs nursing research and education at City of Hope, a cancer treatment and research hospital based in Duarte. “Then, it’s like having a clear lens.”
Both she and Dr. Finly Zachariah, another City of Hope palliative care expert, told me they encourage doctors and patients to discuss end-of-life wishes and advance directives soon after diagnosis with a serious illness, or well before that.
Ferrell told me that when she began her career, the term “palliative care” didn’t even exist. Now, there’s a cultural shift underway in discussing death comfort care. Part of that change, Ferrell said, comes from people sharing their experiences caring for terminally ill loved ones in different settings. Those conversations help others form and express their own end-of-life wishes.
My family’s experience with hospice care came to an end Aug. 2. It was the kind of morning my mom would like — sunny, but just before tipping into the midday August heat she dreaded.
“She’s waiting for the both of you to be here,” one of the hospice nurses said as I stumbled into the living room. In the moment I had no idea what she meant, but I would soon find out.
I sat with my brother and laid my head on my mom’s lap. It was 10:24 a.m., and we watched as Beth Maureen Farestveit, age 65 years and 8 months, drew a difficult breath. Then we waited, and waited, and waited for another.
I asked the hospice nurses if my mom was gone. One blinked out a few tears and nodded.