Jane Swift served as governor of Massachusetts from 2001 to 2003.
Even after two decades out of political office, I still tense up when a priest uses the pulpit to lobby for specific legislation. As a former prochoice elected official who served as acting governor from 2001 to 2003, I am well acquainted with the discomfort among parishioners when political positions emerge from church doctrine.
So, I was surprised to find myself in full agreement with a recent call by my parish priest in his weekly sermon to oppose legislation that permits physician-assisted death in Massachusetts. I oppose these bills not because Massachusetts is doing a good job with end-of-life care — it is failing miserably — but because physician-assisted suicide is a dangerous distraction from the humane reforms our health care system desperately needs.
Five years ago, my husband, Chuck, and I came to a heartbreaking realization. The kidney transplant he had received nearly three years earlier was failing. The grueling dialysis treatments he had long dreaded were no longer working. The beautiful illusion of hope we had harbored for a few glorious years had vanished. Chuck was dying.
That realization carries a suffocating pain that I still lack the capacity to fully capture in words. Because of that pain, I know that the supporters of these bills are often motivated by deep love and a desire to alleviate suffering. Those of us who have walked this path should never judge one another. What I discovered on that journey is that our medical system is terrible at supporting end-of-life care.
Despite access to world-class doctors, hospitals, and gold-standard insurance, we were not spared the indignities of Chuck’s final months. At times, it felt as though the health care system was actively conspiring to complicate our loss. Yet, amid the bureaucratic chaos, I witnessed my husband’s courage as he asked his daughters to find happiness and joy after he was gone, and to forgive him for falling short of his goal to see them graduate from college. I gained spiritual insights as Chuck and I discussed not only what might come next for him, but how I might experience that and be supported by him after his physical presence had left.
Those final, sacred chapters were a gift. They risk being lost entirely under physician-assisted suicide. To avoid pain, the dying and their families do not need to end lives sooner; we need those in power to fix the system so that final days are defined by comfort, not administrative cruelty.
To achieve that, we must start with three critical reforms.
Expand hospice care eligibility
Hospice workers are the heroes of the health care system, yet Chuck was only eligible for 48 hours of care. He had been in end-stage renal failure for months, enduring dozens of hospitalizations. Because he chose to continue dialysis — which gave him a few good days — he was disqualified from hospice coverage.
This is a cruel double standard. Currently, a cancer patient can receive palliative chemotherapy and qualify for hospice, but a kidney patient on dialysis cannot. Massachusetts should lead the way in revising these regulations to allow concurrent hospice care for kidney dialysis patients undergoing life-prolonging treatments while managing symptoms when life expectancy is short.
Train doctors in end-of-life conversations
Insurers, medical schools, and state regulators all have a role to play in changing the medical culture to encourage radical honesty. It took weeks to get Chuck’s specialists to admit that his immune system was too ravaged to survive a second transplant and that dialysis was failing. Doctors are trained to cure, and our system inadvertently discourages them from delivering hard truths.
There needs to be mandatory training and reimbursement models that incentivize physicians to have timely, honest, end-of-life planning conversations with families before a crisis hits. We were fortunate to have a concierge primary care doctor who could confirm the reality of our situation, but such access shouldn’t be a luxury. Policy makers should consider designating concierge fees as a tax-advantaged expense to encourage comprehensive, proactive primary care.
Streamline the paperwork
I naively believed that standard health care proxy forms were enough to stop interventions when a patient decides enough is enough. They aren’t. Every caregiver must be told about the MOLST form — Medical Orders for Life-Sustaining Treatment, or the pink sheet. If this signed document is not physically present, first responders are legally obligated to intervene with every available resource.
Just as the medical system mandates “well-baby” visits, it needs the same protocol for seniors. It should mandate end-of-life planning consultations at milestones such as age 70 or 75, when completing and updating the pink sheet becomes routine, long before it is urgently needed.
If I could have magically alleviated the suffering my family endured, I would have. But physician-assisted suicide would not have spared us; our deepest suffering and Chuck’s was emotional and spiritual, not merely physical. There is a real, irreversible danger that in a desperate effort to truncate the painful moments of life’s final chapter, we will lose the beautiful ones, too.
Let us choose the harder, better path: Let us reform our health care system to surround dying patients with truth, dignity, and real support, rather than offering them an exit ramp disguised as compassion.