As medical advances have lengthened our life spans and can improve quality of life as we get older, many people remain reluctant to have end of life conversations with their physicians and loved ones. Pulitzer-prize winning journalist Ellen Goodman confronted this situation firsthand when her mother’s health began to deteriorate unexpectedly. “I think we all have this fantasy that we’re gonna live to 90 and then, Kaboom! You know? But in fact the reality is that many of us will face a long period of being frail and declining,” Goodman said. Today, Goodman has turned her personal experience into a mission to make death part of popular conversation. In 2010 she co-founded The Conversation Project, a non-profit to urge people to express their end-of-life desires before it’s too late.
For a related article, see How to Talk About Dying (New York Times, July 1, 2015)
When caring for an older parent, ailing spouse or sibling struggling with a devastating diagnosis, denial is often a place caregivers dwell. They may be driven there because they feel overwhelmed or angry, or because they don’t understand “medical speak” and want to tune out. And while an initial state of denial is neither uncommon nor unhealthy, according to Dr. Ira Byock, a leading palliative care physician and author of Dying Well, it’s not a place to stay for the long haul.
March 2015, Vol. 10(2) 227–237
Actual and perceived social isolation are both associated with increased risk for early mortality. In this meta-analytic
review, our objective is to establish the overall and relative magnitude of social isolation and loneliness and to examine
possible moderators. We found no differences between measures of objective and subjective social isolation. Results remain consistent across gender, length of follow-up, and world region, but initial health status has an influence on the findings. Results also differ across participant age, with social deficits being more predictive of death in samples with an average age younger than 65 years. Overall, the influence of both objective and subjective social isolation on risk for mortality is comparable with well-established risk factors for mortality.
Death goes in and out of fashion. The topic lingers behind euphemisms for a few years, and then someone calls it forth again, e.g., Elisabeth Kubler-Ross with her disciplined "On Death and Dying" in 1969 and Atul Gawande (see above) with his humane, "Being Mortal" in 2014. Time and again, we must clarify our individual and collective beliefs about how the last chapter changes the rest of the narrative.
Looking Death in the Face
New York Times
December 26, 2016
We tend to defer the question of living or dying well until it's too late to answer. We avoid it because we can.
Death Is Inevitable. Financial Turmoil Afterward Isn't
New York Times
January 13, 2017
Advice on the kinds of financial and estate plans and documents needed to help your heirs.
Is Your Digital Life Ready for Your Death?
New York Times
January 18, 2017
What happens to your email, Facebook, Twitter and other accounts when you die? How to plan ahead.
First, Sex Ed, Then Death Ed
New York Times
February 18, 2017
We need to start learning about and talking about death from an early age. The author suggests starting with high school or younger students.
What Our Cells Teach Us About a "Natural" Death
New York Times
March 13, 2017
Microscopic study of how and why cells die may offer a challenge to the common understanding about the artificial extension of life.
The Patients Were Saved. That's Why the Families Are Suing
New York Times
April 10, 2017
Unfortunately, even patients with clear Do Not Resuscitate (DNR) orders and/or Medical Orders for Life-Sustaining Treatment (Molst) sometimes receive CPR or other procedures. Families are suing and winning "wrongful life" lawsuits.
We're Bad at Death. Can We Talk?
New York Times
May 10, 2017
We need to talk with family and caregivers and make clear our desires about end of life care. Those who are clear are less likely to receive aggressive medical care at the end, more likely to receive palliative care, and more likely to die at home.
The Symptoms of Dying
New York Times
June 20, 2017
The symptoms indicating a person is dying can be frightening for that person and for those who love them. Here, reassurances and ways the symptoms can be relieved. There are also
The Gentler Symptoms of Dying, as outlined in a July 11 follow up.
Should I Help My Patients Die?
New York Times
August 5, 2017
A palliative care physician writes of the difficulties associated with new physician assisted death laws and regulations from the doctor's perspective.
Nearly 1 in 5 Hospice Patients Discharged While Still Alive
National Public Radio
August 11, 2017
Hospice is designed to care for those in the last 6 months or so of their lives. Some hospice agencies, particularly for-profit ones, are discharging patients who live "too long."
How to Plan for the Unforeseen
New York Times
October 6, 2017
While you can't plan for everything, there are a lot of things you can do to make things easier for your survivors. Apps and counselors can help.
What It's Like to Learn You're Going to Die
The Atlantic
November 2, 2017
Learning that you are dying, that there is nothing more doctors can do for you, affects people differently. Anger, fear, denial, sadness and acceptance are all normal - and may come together or at different times.
Understanding Grief
New York Times
January 15, 2018
Grief is a process. It takes different people different amounts of time, and each person grieves differently. We need to understand, both to help others grieve and to deal with our own grief. Most importantly, we need to understand that we never "get over it."
Want to Plan for Your Death and Funeral? Here's How
New York Times
February 20, 2018
You can make arrangements with a funeral home before you need their services. Generally, this does not require pre-payment, and the arrangements may be transferable if you move. This article provides basic information.
Thinking About Having a "Green" Funeral? Here's What to Know
New York Times
March 22, 2018
A growing number of people are exploring "green" funerals, forgoing the expense and environmental costs of embalming, traditional caskets, concrete vaults, etc. The Green Burial Council provides information on alternatives.
You've Detailed Your Last Wishes, but Doctors May Not See Them
New York Times
March 27, 2018
Conversations between doctors and patients about end of life care are increasingly common, but the records of those conversations may be buried in electronic medical records and not available at critical junctions. There are no standards for ensuring that the information is readily available. And electronic medical records systems don't always "talk" with each other - your doctor's system may not be accessible in the ER.
"Everyone You Know Someday Will Die"
New York Times
May 4, 2018
A collection of previously published articles about death and dying, including the death of a parent, a child, or facing your own death.
When a Health Insurer Also Wants to Be A Hospice Company
New York Times
June 22, 2018
Humana, which sells Medicare Advantage plans, is buying two hospice care providers. For-profit hospice providers can make as much as a 40% profit from their patients, while not-for-profits barely break even. The difference is indicated in different standards of care, including charges of overmedication, understaffing, hospital referrals, etc. by the for-profit providers.
The Darker Side of Living to 100
CNN
July 9, 2018
Although the number of people living past 100 is increasing, research indicates that they are not living healthier. Illness, chronic pain, disability, and expensive but hopeless medical care are common.
The Mystery of End-of-Life Rallies
New York Times
July 24, 2018
There are lot of stories about people in their last days or even hours suddenly becoming lucid, wanting food, and otherwise "rallying." Sometimes, these rallies lead the family to believe that their relative is going to recover. The phenomenon is real, but not well understood.
How Do You Want to Die?
New York Times
July 28, 2018
Technologies like implantable can lengthen life, but they can also cause extreme pain. Doctors and patients need to have better conversations about the use of all medical technologies. We all want to die peacefully in our sleep, and technology makes that increasingly less likely.
In Life's Last Moments, Open a Window
New York Times
September 8, 2018
Dying patients are happier and calmer when they can see sunshine, feel fresh air, hear birds, etc. Hospice providers are beginning to recognize this desire to be part of the world at the end.
When the Hospice System Fails
New York Times
October 17, 2018
Because patients and their families sometimes delay starting hospice care, a dying patient may end up back in the hospital on a ventilator and with all the interventions they didn't want. Patient and family education (and all the paperwork) should start earlier so that everything goes the way they wish.
Tell Me One More Time What to Do About Grief
New York Times
December 29, 2018
Grieving takes time. Allow yourself that time. Accept help - and ask for it. Do as little or as much as you feel like. It won't go away, but it will, eventually, get better.
What to Say (and What Not to Say) to Someone Who's Grieving
New York Times
February 14, 2019
It's hard, we all know that. And sometimes we say something well intentioned that actually hurts. Here is advice on what to say to someone who is grieving.
A Good Life and a Good Death: What Is Palliative Care?
NPR
April 25, 2019
An interview with Dr. Sunita Puri discusses what palliative care is, how it differs from hospice care, and how the methods used in palliative care can be combined with other treatments (for cancer, for example) to improve and sometimes even lengthen the lives of patients.
How to Make Doctors Think About Death
New York Times
April 27, 2019
Written guidelines on how to make end-of-life treatment decisions - how to decide when comfort rather than cure is the goal - would help both health care providers and patients and their families at critical junctions.
Aid in Dying Soon Will Be Available To More Americans. Few Will Choose It
New York Times
July 8, 2019
State legislation will expand the right of terminal patients to have their physician assist them in dying. However, many of the laws are written in such a way as to make the actual choice nearly impossible. And studies show that few patients who have the choice actually go through with it.
Living Intimately With Thoughts of Death
New York Times
July 25, 2019
Many people facing death - whether because of a cancer diagnosis or age - have very mixed feelings. Several self-assessment tools and books are available to help understand and deal with those feelings and those of family and friends.
Isolated and Struggling, Many Seniors Are Turning to Suicide
NPR
July 27, 2019
A growing number of seniors are attempting suicide, and a much larger percentage are successful than in the population as a whole. While the reasons are complicated, among them are isolation and loneliness, chronic disease, losing the ability to perform routine functions like driving or reading, and grief. Family members and professionals need to be aware of warning signs and of what they can do to head off an attempt.
Rest Me in a Pine Box and Let the Fiddle Play
New York Times
July 26, 2019
Planning ahead for how you want your body to be handled after your death is as important as having a Will and medical directive.
How to Prepare Yourself for a Good Death
San Francisco Chronicle
July 8, 2019
Think ahead about how you want your life to end, particularly if you are dealing with a terminal illness. Be sure that your family and friends know and support your decisions. Choose doctors who will also support you.
Moral Distress in Neurosurgery
New York Times
August 15, 2019
When is surgery - particularly neurosurgery - not a good idea for an older patient? Is prolonging life the only criteria for making such a decision, or should quality of life be part of the equation? Who and how to decide.
How Can Doctors Find Better Ways to Talk - And Listen - to Patients Close to Death
Mosaic Science
August 27, 2019
New research is combining palliative care training, linguistics, and AI to identify ways to improve conversations with patients and their families concerning when to end treatment, how to treat pain, and approaching the end of life. Studying the silences has proven as important as the words, indicating that learning to listen is critical.
A Beating Heart, Even After Death
New York Times
September 24, 2019
Tens of thousands of Americans have mechanical devices - left ventricular assistive devices, or LVADs - helping their failing hearts continue to function. Although some have suffered severe complications, others have lived for years with the implant. And improvements in the devices are making them more attractive. However, there are many downsides to the devices, and patients need to be fully aware of them to make educated decisions about whether to opt for the implant. Regulation and oversight of the devices is also essential.
What's a "Good Death?" It's Not Quite the Peaceful Drifting Off I'd Imagined for My Dad
Washington Post
September 29, 2019
Hospice and palliative care do as much as possible to alleviate pain and other physical problems at the end of life, but they aren't always completely successful. Nevertheless, the special care provided makes a big difference for the patient and for the family.
More Americans Are Dying at Home Than in Hospitals
New York Times
December 11, 2019
Most people say they want to die at home, so new statistics should be good news. But many of those dying at home are very sick and require care their families are not prepared or trained to provide. Hospice services are limited, home health aids are expensive, and family members end up providing health care for weeks or months with little or no respite.
The Movement to Bring Death Closer
New York Times
December 19, 2019
A small but growing number of people are opting to return to preparing the body and holding funeral services at home. They believe that spending time with the dead allows for better expression of love and of grief.
Her Way
Washington Post
December 11, 2019
The author describes the process required to allow his mother to end her life under Washington, DC's "Death with Dignity" law. The biggest hurdle, he reports, was finding a pharmacy that would fill her doctor's prescription. In fact, the only maker of the preferred drug for assisted suicide has stopped its manufacture.
She is 96 and Does Not Fear Her Death. But Do Her Children?
New York Times
January 5, 2020
The oldest old are generally comfortable with their coming death. Their children, however, frequently don't want to talk about it, and try to deny it's going to happen. Conversations about end of life are always difficult, but this split exacerbates the problem.
CPR, By Default
New York Times
January 31, 2020
If a patient is in heart failure, medical professionals do CPR, even if the patient is near death from other causes. But CPR can break bones and neurological damage, particularly among the frail elderly. Most patients over 80 who suffer cardiac arrest outside a hospital and are given CPR and admitted to the hospital do not survive. Discussion with physicians and family members is essential to make sure your desires regarding resuscitation are known. New forms of DNRs, applicable outside hospitals, are becoming available as well.
Many Americans Say They Want to Die at Home. It's Not Always Easy to Make That Happen
Washington Post
February 16, 2020
Most people want to die at home, not in a hospital. But the burden of caring for a dying person can be physically and emotionally exhausting for the caregiver. Resources are available to help. In home hospice, covered by Medicare and most insurance with someone expected to live 6 months or less, is vitally important, but it does not provide all of the care needed. And sometimes, end of life care at home simply becomes too much, despite the best of intentions, and a hospital or nursing facility is the best option.
I'm Going to Die. I May as Well Be Cheerful About It
New York Times
March 6, 2020
A personal essay on how to accept mortality. "Like almost all of my peers, I want to die young as late as possible." None of us want to face dementia or lingering illness. We want to continue to be active and useful.
It's Time to Talk About Death
New York Times
March 27, 2020
The Coronavirus has made discussions about end of life care more critical than ever. Decisions may have to be made remotely and very quickly. Be sure your family and care givers know what you want.
There Is No Vaccine for Grief
New York Times
March 2, 2021
"[G]
rief is a reaction to a change that you didn’t want or ask for" and there's no way to escape it. But you can prepare yourself to experience the strong emotions associated with grief by, among other things, making sure to tell others how important they are to us, and building support networks so they are there when we need them.
"I Need to Know I Tried"
New York Times
May 10, 2021
A handful of hospitals are working with families of ICU patients to offer "time limit3ed trials" of treatment. Typically, these are last ditch efforts, with a set time that they will be tried, to see if the patient improves. If so, the treatment would be continued until no longer needed; if not, treatment would be discontinued at the end of the agreed period, and the patient would likely die. Preliminary results are promising.
What I've Learned over a Lifetime of Caring for the Dying
New York Times
August 11, 2021
End of life care can be exhausting. Hospice and palliative care involves a team, with the "hands on" caregivers key to the comfort of the patient and the family.