The first part of the Spotlight Team’s three-part series “Last Words” exposed layers of inequities, in race and income, care and opportunity, that shape life down to its final hours. How do we change things for the better here in Massachusetts? And who can best bring about this change - government leaders, hospital officials, physicians, clergy, or others ?
Please share your ideas in the box below, as well as see some reader comments so far. If you provide your name, it may be posted with your comment, but giving your name is not mandatory and does not affect the chances of your response being posted.
Some submissions may be edited for length and appear in future coverage by the Globe.
Some reader comments from day 1 of the series:
We need to create rituals which honor the final phase of the aging adult life stage which ends in recognizing death as a part of life where each individual’s wishes are respected and followed. -- Venus Masselam
Kudos to the Globe for promoting palliative care, now please promote fully funded home care for all, for rich and poor, so that people can stay-at-home and out of nursing homes. Expand the program of independent living for disabled people to older people also. -- John Kelly
Make assisted suicide legal. -- Anonymous
Many low income immigrants to Massachusetts, including many with lawful status, face a 5 year bar before they can access state medicaid services that cover in-home end of life care. This means that many immigrants are SYSTEMATICALLY excluded from accessing high quality end of life care (including hospice and in-home nursing care). This heightens pain and suffering of patients and families, and contributes to higher health care costs as patients die in expensive acute care settings -- Jennifer Brody
We need a national health system for all - David Brindle
Covid-19 is another confirmation that money is the gravy train that opens the door to options and, race, color ,nor creed matter. The need for Affordable and quality heath care with no exceptions like preconditions. Affordable co-pays and prescriptions, no restrictions regarding length of in hospital care, availability to specialize care, In home care to help families, availability to Hospice care. - Mary Ellen Johnson
As a retired ICU nurse, I probably have a perspective on death that relatively few share. Health care professionals work incredibly hard to save most everyone. At the same time, families expect that this is the case, often unrealistically. We all need to allow death to happen peacefully, as with hospice care. We need to accept that death is part of life. - Rose Sullivan
Allow the patient to decide when life should end. Death with dignity. - Anonymous
We need to treat the dying with dignity and we need to treat them as if they are still alive and that they have a value. We need to work on enrichment and inclusion and not make it a dark empty end....As a whole, we do not allow the dying to live. We assign them the job of dying. We need to treat the dying with dignity as if they still have a value and are worthy of living. - P. Lyne
A vote for the Biden-Harris ticket as well as other Democratic office seekers. My experience as a 74 year old attorney is that Democrats provide more realistic and humane responses to end of life care for all races and income groups. Peter Palica
My mom passed away 3 days ago, at home, and we’ve no regrets. Recommend “Being Mortal” by Atul Gawande and “Final Gifts” by Maggie Callanan. Home based palliative care followed by hospice (which is covered by Medicare). - Donna Megquier
Continue to espouse the fact home hospice is an excellent option for the dying and their families. Mostly, provide resources like Five Wishes so family members know the wants, needs and desires of those who are dying beforehand so they can honor their wishes. Above all, please discuss the necessity of a Healthcare Proxy and similar documents so everyone has an advocate in a medical setting when they need it most. - J. Madden
Emergency doctors who will listen to patient wishes, whether from family or the patient, especially when both. Better paid direct care providers who invest themselves in caring for a pittance. Round the clock, physically-present, support for family caregivers. Medicine, hospice/palliative care, clergy, health care administrators, researchers, mental health counselors, and yes, financial people need to be engaged in a Manhattan project like project to address this. Save people for what? - Anne Devaney
Tell the truth to patients. do not lie. let patients get care at home. Anonymous
Honesty. Healthcare professionals must present a patient’s care options frankly and pull no punches about side effects, likely or unlikely. Major surgery can bring cognitive changes. How will that affect someone with dementia? Define what back to normal is. For a surgeon, that may be a return to the ability to, say, get out of bed to go to the bathroom. For the patient, that normal may be driving or going for a walk. Don’t pull punches. -- Anne O’Connor
By addressing the cost of long-term care. those who chose to save pay up to $100,000 per year for nursing home care; those who could, but didn’t save, are subsidized by the same taxpayers who saved -- Frederick Bulman
Massachusetts needs to pass a bill to allow terminally ill people, or their legal representative, to choose to end their own lives, as is done in Washington, Oregon and California. -- Anonymous
First of all, thank you for shining your light on this story. It makes a big crack in the concrete wall of ignorance and denial in our society of the disparities and inequalities that our “culture” has long tolerated. -- Anonymous
Normalize death....it is not a battle to be won or lost....it is how life ends for everyone... -- Patricia
Have health insurance cover the different options of end of life care. I would guess it could save money by keeping people out of hospitals. When my dad turned 90 he had a difficult hospitalization. The care was terrible. After he was home, My sister and I began talking with him honestly and frankly about how he wanted the rest of his life to be. (Thank you, Atul Gawande!). Thankfully he had the funds to have the help he needed at home and made the decision to never be hospitalized again. -- Anonymous