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Aspects of Aging

End of Life Issues

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Being Mortal
Atul Gawande - Medicine and What Matters in the End
(Book review)

New York Times

November 30, 2014

Atul Gawande's new book, “Being Mortal,” is a personal meditation on how we can better live with age-related frailty, serious illness and approaching death. It is also a call for a change in the philosophy of health care. Gawande writes that members of the medical profession, himself included, have been wrong about what their job is. Rather than ensuring health and survival, it is “to enable well-being.”


Dying Shouldn't Be So Brutal 

New York Times

January 31, 2015

People who are approaching the end of life deserve the security of confident, skillful attention to their physical comfort, emotional well-being and sense of personal dignity. Their families deserve respect, communication and support. Exemplary health systems and healthy communities deliver all of this today. But they are few and far between.

  

PBS Newshour
April 10, 2015
 

Who speaks for you if you are not able to speak for yourself? Who determines what kind of care you want at the end of life, how your finances are handled, how your estate will be distributed? You do … but only IF you’ve prepared ahead of time. This article, outlines the types of documents that are needed to ensure that your wishes are respected.  The documents are fairly straightforward, yet many people postpone taking action to complete them. It isn’t easy to think about your own incapacity or death. But these important legal and health care decisions not only protect your own interests, they protect your family and loved ones by clarifying the kinds of care you would like to receive if you are seriously ill. After completing the legal paperwork, the next very important step is to sit down and talk with your family about the decisions you’ve made and why.

 

PBS Newshour

April 2, 2015

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)

 
PBS Newshour
January 29, 2015

Promoting independence and “successful aging” is a laudable goal for many and a common media headline. But it’s not the reality for people caring for anyone diagnosed with a terminal illness or a relative who struggles to manage day to day as a result of debilitating health conditions and growing frailty. Most people would prefer to talk about wellness rather than illness, so we tend to avoid planning for advanced illness and ultimately death. One valuable, often overlooked, and generous Medicare benefit for those caring for a family member or friend is hospice care.  Some say that if they bring up the subject of end-of-life planning, their parent will think they want to “push them aside” or “be done with them.” Spouses say that they worry that even thinking about it will somehow hasten death or cause their partner to die sooner. The reality is, given the right opportunity, those living with illness and frailty often welcome the opportunity to share their preferences about their end-of-life choices. Listening without judgment to the individual’s worries or advice can be a gift to them. Researching what is available to help care for a family member living with advanced illness relieves the individual from having to do the work themselves.


PBS Newshour
December 24, 2014

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.  

The author contends that providing quality care requires conversation. And caregivers should start the talks, even though doing so is scary.  “We are a deathophobic society,” he says. “For many health care professionals, the conversations around illness and death are clinical and cold, they are not personal.”

As a caregiver, you must find out about your loved one's wishes and needs.  You need to talk with the health care team so everyone in it understands your advocacy role. You should have conversations with your family and friends to let them know that your life has taken a detour as you provide care and that you may need help or understanding yourself.  Caregivers who exist in chronic denial prevent these essential conversations from happening.

 

Association for Phychological Science
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.
 

New York Times
February 14, 2016
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.


End-of-Life Conversations May Be Helpful to Patients and Families
Washington Post
December 4, 2021

"Dignity therapy," conversations with patients and their families about how they want to deal with the end of their lives, can help everyone involved feel more comfortable as the end comes. The patient is able to reassure themselves and their families about what they want, and the family can accept those desires.


On the Obligation to Prevent People from Dying Alone
Washington Post
December 8, 2021

A hospice volunteer writes about the need to be there when a patient dies. The dying feel the presence of others. The family need a break from their vigil. The patient should have someone there to meet their needs. COVID has made this increasingly difficult, but no less important.


How to Help Someone with Grief After a Sudden Death
New York Times
January 7, 2022

The survivors of a sudden death may have a double grief, both the loss of a loved one and the loss of their community of friends who don't know how to help them. This article provides guidance for friends and family on how to help.


We Must Learn to Look at Grief, Even When We Want to Look Away
New York Times
February 23, 2022

A palliative medicine doctor writes about having to face the grief of his patients' family and friends, and what that has taught him.


In the ICU, Dying Sometimes Feels Like a Choice
New York Times
July 31, 2022

When a patient in the ICU is not getting better, but is also not getting worse, doctors and families are faced with the agonizing choice of how long to allow machines to maintain a "life."


What Happens When the Brain Goes Quiet But the Heart Continues Beating?
New York Times
September 15, 2022

There are different definitions of death. An understanding of those, and particularly of brain death, is critical for families consenting to organ donation. 


Funerals Can Cost a Fortune. Here's How to Keep Prices in Check
Washington Post
September 29, 2022

Planning a funeral is stressful. Grief and related emotions interfere with careful decision making. Ways to limit costs include cremation instead of burial, a plain coffin rather than an elaborate one, etc. Preplanning your own funeral can help your loved ones. If you are making the decisions, don't go alone. And there are sources of financial assistance.


After a Loved One Dies, Red Tape Adds to the Grief
Washington Post
November 20, 2022

There is bureaucracy involved in tying up the affairs of someone who has died. But the amount of red tape involved is never ending. Insurance, bank accounts, credit cards, unexpected bills (often sent to collection agencies)....... And the "customer service" representatives one must deal with frequently appear unfeeling. There are some things you can do to make it a little easier. And a lot of things corporations and government agencies could do.


When the Treatment of Last Resort Sends a Life into Limbo
New York Times
November 22, 2022

Severely ill patients, including but not exclusively those waiting for transplants, may be put on ECMO. Extracorporeal Membrane Oxygenation takes over the function of the heart and lungs. In theory, patients can remain on ECMO indefinitely. But at some point, a decision to stop may be necessary.


How Hospice Became a For-Profit Hustle
New Yorker
November 28, 2022 (Dec. 5 print issue)

The concept of hospice care was introduced in the US in the mid-1970s and has grown so far that half of Americans die in hospice care. For-profit providers, seeing a huge, loosely regulated market, have exploded until they represent more than 70% of hospices. Unscrupulous providers sign patients up even if they shouldn't be in hospice - raking in huge amounts of government (Medicare) money and sometimes preventing patients from receiving the curative care they need. Whistle blower lawsuits have revealed some of the problems, but haven't changed anything.


How to Make a Caregiving Plan
New York Times
January 19, 2023

Have you thought about who will take care of you if you're sic or at the end of your life? Planning ahead for both health care and living care (groceries? house upkeep?) is important, and helps those who will be stepping in know what you want. For more, from the perspective of a care giver, see Caring for Aging Parents Is Hardd. 


How Does Hospice Care Work?
New York Times
February 22, 2023

Understanding end of life care is crucial as we age, hoping for a peaceful, pain-free end at home. Who can enter hospice, finding a hospice care agency, and understanding what to expect are all important.


As a Doctor, I Know Being Ready to Die Is an Illusion
New York Times
March 29, 2023

Medical professionals, patients, and their families all search for signs that a sick person recognizes that they are dying. There are no clear signals, in most cases. "A good death" should be defined by how well and honestly the patient is cared for.


What We Get Wrong About Death
HuffPost
April 5, 2023

Palliative care and hospice professionals share insights into what the process of dying really is. Talking about it ahead of time can reduce anxiety and guilt among the patient's family. And a real understanding of what hospice is helps.


10 Ways to Take Care of Yourself When You're Grieving
HuffPost
April 5, 2023

There is no right or wrong way to grieve. But part of the process has to involve making sure you aren't neglecting your own needs. Most of all, recognize that it's a life long process.


More People Are Getting Cremated, But What Happens to the Ashes?
Washington Post
April 7, 2023

After cremation, the remains are given to the family, but they then have to determine what to do with them. Scattering ashes frequently requires permission - which can be denied. Because of high acid content, scattered ashes can actually kill plants. It's important to plan ahead.


Hospice Is a Profitable Business, But Nonprofits Mostly Do a Better Job
New York Times
June 10, 2023

Almost 3/4 of hospices are now for profit business, but a research surveying family caregivers indicates that there are significant disparities in care between for profits and nonprofit providers - with patients suffering. For profit providers are more frequently cited for not responding to requests for care and for moving patients off their lists, only to have them admitted to hospitals and added back. There are increasing calls for better oversight of a growing industry.


A Hospice Nurse on Embracing the Grace of Dying
New York Times
October 21, 2023

An interview with the author of a new book, The In Between, on how everyone, not just the dying, needs to approach death.


What Is the Line Between Life and Death? Here's My Answer
Washington Post
October 17, 2023

The Uniform Law Commission met recently to try to develop a new definition of brain death, which is critical to transplant surgery, among other issues. They couldn't do it. Their efforts seem to have foundered on the question of brain vs. heart activity stopping. If the definition is linked to cardiac activity, fewer organs will be available for transplantation, because circulation is necessary to protect the organ. But people declared brain dead show some signs that can only be defined as "life."


It's OK to Never "Get Over" Your Grief
New York Times
November 25, 2023

Traditional mourning practices have generally disappeared, but they served a purpose. Grief is a normal part of life, and doesn't always end. We need a place in our lives for those who are dead. 





 

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