When my mother was 56 years old, she found out that her father had metastatic prostate cancer. She dropped everything, took leave from her job, and flew halfway across the globe to care for him in Israel. He’d had a prostatectomy for benign hyperplasia years before, but a PSA check for cancer screening was not performed. The cancer grew from whatever residual prostatic tissue had been left behind, and by the time it was found it was already in the bones. My mom described her father marching in place at night “like a soldier” to distract himself from the referred pain in his legs. She diapered her father when the cancer took away his bowel and bladder control, and she watched him suffer for weeks with a terminal illness, and then die in pain.
I am her only child, and my mother made sure I knew that it was my duty, when the end of her life arrived, to advocate for her so that she could die quickly and without pain if she, too, was given any terrible and terminal diagnosis. Two months ago, I got the call.
The “sciatica” she had been struggling with for the past 6 months was not, as her doctors had first told her, age-related arthritis. Her back pain was coming from an aggressive metastatic lung tumor in her sacrum. The tumor had grown enough that it was visible on an MRI, eroding the cortex, spreading into the soft tissues of her back, and crushing against her nerves — causing her the constant bone-breaking pain her father had suffered. I knew it was a death sentence, and so did she. We didn’t know how long my mother had left or what treatment might make that remaining time bearable, but day by day it was becoming something that this tough woman who had lived a hard life could not bear.
We hit the first roadblock when I tried to get her palliative care to deal with the pain. She had already been struggling with pain for 6 months while being worked up for the misdiagnosed sciatica; now that we knew she was suffering from aggressive metastatic cancer, surely we could get some aggressive medications. I remembered learning the pain scale in medical school, and being taught that metastatic cancer pain is the worst pain a hospital patient will suffer: worse than labor pains, kidney stones, even pancreatitis. It is torture. I expected my mother’s medical team would hit it right away with everything they could.
No. Both the oncologist and the internist said that I couldn’t even request a palliative care consult until after we had a tissue diagnosis. That didn’t make sense to me, so I went online to Physician Mom’s Group, a Facebook peer forum of over 10,000 doctors, to seek a crowdsourced second opinion. They helped me find Arian Nachat, MD, a San Diego emergency physician and palliative care specialist, who helps patients fight their way across the American healthcare landscape. I paid her out-of-network and out-of-pocket to advise my mom’s internist to get the patient on dexamethasone (Decadron), methadone, and hydrocodone in order to treat her cancer pain with appropriate urgency while she awaited the requisite cancer work-up.
My mom’s doctors told me that we would need to put her in a hospital in order to get expedited care. At that point in her illness my mom was mobile, independent, and resistant to being told she would be stuck in a hospital bed. She wanted to be at home, with her food and books and the neighborhood support network. I spent hours on the phone with the offices of her oncologist, radiation therapist, and internist, trying to get her care expedited as an outpatient.
Days ticked by. The cancer grew and the pain got worse. It was only after she developed asymmetric lower-extremity edema that I was able to convince her to go to the hospital as an inpatient, in the hope that might get her into palliative radiation therapy.
My mother underwent five treatments of radiation therapy and collapsed at the clinic from the pain. An ambulance took her to an overburdened, under-resourced city hospital where the emergency doctor gave her morphine, assisted her to the toilet, and discharged her. I was incredulous.
“She’s not safe!” I told the hospital’s social worker. “She can’t walk — “
“We will give you a wheelchair,” she said. “There will be a charge, but then you can keep the wheelchair.”
“She’s dying. And I don’t have a wheelchair ramp at our house. How do I get her in? How do I keep her from falling?”
“Not walking isn’t a reason for hospital inpatient admission. Here is a list of private companies you can pay to get caregivers who can help her ambulate.”
“How do I manage her pain? She’s in extreme cancer pain that comes in waves. She’s fine now because you pumped her full of morphine, but what happens when that wears off? She’s having breakthrough pain at night. She’s screaming. She says it’s 15 out of 10!”
“Work that out with the outpatient palliative care doctors,” said the hospital’s social worker.
I was crying while I took the discharge paperwork. Crying while we signed for the wheelchair purchase. We managed to get my mother into a friend’s car, and my husband switch-backed her up the short but steep driveway. I helped her hobble out of the wheelchair and up the two steps into her apartment. She asked me to take her to the toilet.
And then my mother collapsed in the doorway and soiled herself. She started sobbing in pain and humiliation. I cleaned her up and called the oncologist, who instructed me to call 911 for another ambulance. The oncologist said he had alerted the ED at the hospital closest to us that my mother would be coming in.
“We can’t take her there,” said the paramedic, while unloading the gurney in our driveway. “We are still on divert.”
“But that ED is waiting for us.”
“Doesn’t matter. Ever since COVID, the hospitals all get overloaded and send patients elsewhere. That’s what divert means, and we’re on a divert from that ED. We can either take you to the ED you got discharged from this morning or to another hospital, but not the diverted one.”
We had no choice. My mother needed emergent care.
So the paramedics — who were sympathetic, professional, and skilled, but just as powerless as I was to help their patient get the care her oncologist was directing — loaded her into their truck and we set off, headed back to the hospital with the rushed ED and the cold-hearted social worker.
By sheer luck or the grace of God or the intervention of my grandfather’s ghost, the diversion was lifted for 5 minutes while we were en route. The paramedics banged a U-turn, and brought me and my mom to the place she needed to be.
But next we had another roadblock: triage. The paramedics unloaded us and put my mother back in her shiny new wheelchair and she sat in the ED bay, hungry and writhing in pain hour after hour while we waited for processing and a bed. We hadn’t thought to bring her pain medications from home — she was going to a hospital, after all. She was screaming and crying. I started crying. Even the other patients waiting to be triaged tried to intercede on our behalf to get her seen.
It took 5 hours to get my mother into an ED bed, and then, throughout the night, the medical team was unable to manage her pain with the piddly medications she already had in her chart. She needed the big guns, the opioids the nurses couldn’t administer without a prescription and the ED doctors couldn’t prescribe without authorization from palliative care — authorization they said they didn’t have.
So, my dying mother went from suffering at a clinic to suffering at home to suffering in an ED to suffering in a hospital bed.
The following day she was admitted to the oncology ward. I promised her that the doctors there would understand how to manage cancer pain and would be able to treat hers. The nurses were loving and attentive. Her grandkids had arrived, and we were all able to hang out in her room. After consulting with her oncologist about the results of the radiotherapy — the tumor was outpacing any treatment that might beat it, shrink it, or even stop it — my mother opted to stop the radiation and turn to palliative chemotherapy instead, trying to buy more time with us. She understood that any treatment would not be curative, but we had to do something, anything.
The pain was unrelenting. It spread one day to the opposite leg, the next day to her back, and then, she reported, “all over.” All-over pain. She would be fine for a few hours, and then a sudden pain spike would strike. She writhed and howled. Her eyes rolled up and her mouth gaped and her breath came in gulps and gasps between screams. Her legs were burning up — she begged us to make it stop. We put ice packs on them and gave her the IM and IV hydromorphone (Dilaudid) that the nurses were finally authorized to administer, but it was no use. She called the pain a monster. Once it had her in its jaws, it didn’t let up. It bit down harder, hour by hour. Within 2 days my mother started saying, “I want to die. Let me die. I can’t do it. It’s not worth it.”
And then we came to the final, cruelest roadblock: When she first spoke those words to the nurses, it was Presidents’ Day weekend. Palliative care was off-service and only available by phone. The hospitalist told me that hospital inpatients were not eligible for California’s dignity in death option — it was available only to outpatients in hospice clinics. Despite my mother repeatedly, forcefully telling every nurse and doctor who entered her room that she wanted to exercise her legal right to die that day, that very hour, quickly and pain-free, we were told that hospital policy forbade her from exercising that right.
California’s physician assisted end-of-life options are much more restrictive than Medical Aid in Dying (MAID), which is available in some other countries. Under the California protocols my mother would have had to be eligible for discharge to hospice, and would have had to be able to self-administer her medications. Meanwhile, her pain was too severe for her to manage with oral medications — which is the only way she would have been eligible for that mandatory discharge. By the time we appealed the hospital policy decision to their corporation’s ethics commission, my mother was already delirious and unable to self-administer oral medications. Still in pain, she needed palliative sedation.
The nurses just watched it all, watched my desperation, her grandchildren’s trauma, with pity. They’d seen families like us before. Lots of us.
When the palliative care physician came back into work after the holiday weekend, she reiterated that it was hospital policy to allow patients to exercise their rights under California law, but the hospital corporation’s administrators had claimed they couldn’t find doctors who were comfortable implementing those rights.
Gaslit and furious, I watched my mother writhe in pain, even while unconscious, under sedation on inpatient hospice. She received doses of morphine, lorazepam (Ativan), and phenobarbital that would kill a horse, but she had developed “hyperalgesia.” The nerves were still being assailed by cancer. During episodes of breakthrough pain or when repositioned in the bed to prevent pressure sores, she would grimace and grind her teeth, moan and cry — but she couldn’t talk, didn’t see us, suffered helplessly when she never needed to.
We Californians have been told that we have passed laws that have given us the right to physician-assisted suicide protocols that compare to Canada’s. This was not our family’s experience. My mother died in pain, alone in a hospital bed, in the middle of the night. She had been NPO (“nothing by mouth”) and without IV fluids while sedated, and became cachectic. We were there day after day, watching my mother shrink, watching her bones and sinews show themselves beneath her thinning skin. Her heart likely gave out due to electrolyte imbalance. It was a cruel, unnecessary, absurd end to a good and loving woman’s life.
It was the one death she had promised me to protect her from, and I couldn’t.
As a forensic pathologist I am often asked in court to testify on conscious pain and suffering in legal cases, to quantify pain. I can testify that dying this way, in bone-eroding pain that grows by the hour and can’t be managed with meds, unable to control your bodily functions, powerless to end the suffering, is at the top of my list of the worst ways to die.
Medical Aid in Dying legislation exists in New Zealand, where I currently live and work, and I’ve spoken to families who have made use of it. They can’t hide their horror when I tell them the story of my mother’s last days. We need to find a way to make it possible for Americans to have a dignified option for avoiding the death my mother suffered, and the trauma we who loved her will carry with us until the day of our own deaths.
The week my mom was in the worst pain, we got a mailer with the most recent update from Compassion and Choices, an organization that advocates for Medical Aid in Dying. We’re on their mailing list because my mother had been donating to them regularly for over 20 years, ever since her father’s death.
Judy Melinek, MD, is an American forensic pathologist currently working as a contract forensic pathologist in Wellington, New Zealand. She is the co-author with her husband, writer T.J. Mitchell, of the memoir Working Stiff: Two Years, 262 Bodies, and the Making of a Medical Examiner. You can follow her on Twitter @drjudymelinek and Facebook DrJudyMelinekMD.
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