Thursday, December 31, 2015
This felt very wrong so encouraged and supported by my husband we decided to start a campaign to encourage and remind healthcare staff about the importance of introductions in the delivery of care. I firmly believe it is not just about knowing someone's name, but it runs much deeper. It is about making a human connection, beginning a therapeutic relationship and building trust. In my mind it is the first rung on the ladder to providing compassionate care."
Hello My Name Is...
Wednesday, December 30, 2015
When my husband, Dave, passed away last spring, my whole notion of plans crumpled. I stopped trying to meditate, but my connection to this group of friends was one of the things that helped pull me through. They checked in daily. Even though they live across the country, they showed up early and often. They did not just hold me as I cried—they cried with me. One day when I was feeling particularly alone and down, a card from one of them arrived in the mail. It said, “One day she woke up and understood we’re all in this together.” It has hung above my desk ever since. These amazing women have supported me since I was ten years old—through ups and downs, laughter and tears, life and now death. Together, we have been through adolescence, college, starting careers and families. They’ve advised me on everything—from what dress to wear to the prom to what job to take. They were part of the inspiration for Lean In Circles and they are a big part of why I am able to smile again. I believe deeply that everyone needs this kind of help and connection. We all need people who encourage us, believe in us, and remind us that we are not alone. For women, this kind of support can be especially important in navigating our lives and pursuing our ambitions. Too often the world tells women why they can’t do something; our friends are the ones who tell us we can... and help us figure out how.
Monday, December 28, 2015
The move by Blue Cross Blue Shield of Massachusetts comes as a growing number of health organizations put more emphasis on how patients are treated at the end of life by providing and paying for care that is more in line with patient wishes. Most Americans, for example, say they want to die at home, but most still die in hospitals and other institutions, according to several studies."
Blue Cross expands benefits for end-of-life care - The Boston Globe
Sunday, December 27, 2015
Saturday, December 26, 2015
My Turn : AJN The American Journal of Nursing
Embracing the Call to Become a Death Midwife | Roberta Verdant
This App Will Help You Sort Through Your Views On Dying
Wednesday, December 23, 2015
The plan would set aside $2 billion a year for Alzheimer’s, tracking recommendations made by experts in the field, in an effort to find a cure in the next 10 years. The sum is about four times what the National Institutes of Health says it has spent annually on Alzheimer’s research in recent years. A new budget package signed into law by President Barack Obama last week boosted Alzheimer’s research spending to $936 million, an increase of $350 million, according to the National Institute on Aging.Visualizations courtesy of Graphiq.
Tuesday, December 22, 2015
"La Crosse is a small town in western Wisconsin, right on the Minnesota border. It has about 51,000 residents. And La Crosse has, over the past three decades, done something remarkable: nearly all its residents have a plan for how they want to die.
"One of our doctors recently told me that making a plan is just like taking blood pressure or doing allergy tests," says Bud Hammes, a medical ethicist at Gundersen Health System, one of La Crosse's two hospital networks. "It's just become part of good care here.""
Wisconsin is learning how to die - Vox
"Early on in tending to my mother, who had Alzheimer’s, I was sustained by other Austen novels, but during the middle stages of her disease it was all “Emma,” all the time. What started as entertainment soon became an important guide.
It seemed that I was always one step behind her illness, so I stockpiled books on caregiving, including Kenneth P. Scileppi’s “Caring for the Parents Who Cared for You.” When I read his statement “In the life of a demented individual, there is one cardinal rule: All change is for the worse,” the person I thought of wasn’t my cognitively impaired 92-year-old mother; it was Emma’s father, Mr. Woodhouse. He is introduced to us as “a nervous man” who hated “change of every kind.”
The novel asserts that Emma had little to distress or vex her, yet describes many distressing and vexing events. Emma is parenting her parent and has been doing so for quite some time."
Jane Austen’s Guide to Alzheimer’s - The New York Times
Monday, December 21, 2015
For the record: Jonathan Freedland on his sister’s farewell Desert Island Discs | Life and style | The Guardian
A beloved sister's last request -- to be "interviewed" by her brother about the music she would want to take with her to a desert island, for a recording that her daughters could listen to after she was gone.
"I decided the only way I could begin to handle this encounter was professionally, to approach it as a radio interview. Fiona had told me what pieces she had chosen and I came with them lined up, ready to play. I worked out what areas to cover and when. I suppose I knew I was distancing myself from what was really happening.
We sat in her living room. Or, rather, I sat. She lay on a couch, legs outstretched, her head supported by cushions, a microphone clipped to her top. At intervals we would stop. She would sip a glass of water, I would go off to microwave the small thermal beanbags she would put by her neck to ease the pain. It was constant and severe by then, but she was not to be deterred. An accomplished lawyer, specialising, as it happened, in medical issues, she revealed herself that day as a natural broadcaster: she was fluent, funny and completely engaging. Nothing was written down, but she knew exactly what she wanted to say."
For the record: Jonathan Freedland on his sister’s farewell Desert Island Discs | Life and style | The Guardian:
Saturday, December 19, 2015
For the past few years, the association has conducted surveys asking Americans 40 and older to rank the importance of including a religious component in the funeral for a loved one. The percentage of people responding that it is “not at all important” has more than doubled in the last three years, from 10 percent to 21 percent."
How secular Americans are reshaping funeral rituals - Religion News Service
When your spouse dies - The Washington Post
Friday, December 18, 2015
Some people might cry at this point, and other people won’t, and it’s good to get that out on the table, the fact that everyone’s going to be doing this their own way. Work on being OK with whatever your way turns out to be, and then work on being OK with everyone else’s ways. If anyone has a problem with your way, try to remember that that’s part of their way. Start forgiving everyone already, if you can."
Advice on coping with death over the holidays.
Thursday, December 17, 2015
Research finds cascading benefits from talking early about our end-of-life care wishes. Conversations about goals and preferences are the first step to formal advance care planning — the process of thinking about and documenting priorities and wishes for end-of-life care. These conversations, in turn, allow patients and families to begin to prepare emotionally for serious illness and can alleviate patient concerns about whether they will be involved in decisions about their care. What’s more, people who have created advance care plans are more likely to choose palliative and hospice care focused on relieving pain and discomfort near the end of life."
A parting lesson from my parents - The Boston Globe
2015 is the year America started having a sane conversation about death - Vox
In some part, the increase of the “lonely death” is the result of an aging global population where people are outliving relatives and friends—12.5 million Americans over the age of 65 live alone. And with more than 50 percent of the world now living in urban areas, the anonymous and transient culture that cities foster adds to our collective unawareness of who might be dying next door.
But we must also take personal responsibility. Our society has become increasingly fearful and intolerant of aging and dying. It is as if we would rather be immortal machines than face the rite of passage that comes with being part of nature.
The introduction of hospice care in the last century has sought to ease the final days of the living, but it serves just a tiny fraction of the population. Now end-of-life volunteer programs are stepping in. The volunteer-led No One Dies Alone (NODA) program was introduced by a nurse in Oregon in 2001. It involves volunteers holding “vigil shifts” for the dying in hospitals, and has been adopted in hundreds of institutions across the U.S., Singapore, and Japan. In the last 10 years, the efforts of NODA have been taken one step further with the introduction of tailored end-of-life volunteer training programs held beyond hospital wards."
Serving the Dying: End-of-Life Doulas
Sunday, December 13, 2015
The section on being a witness for a dying person is especially valuable, regardless of your faith status. "Listening to the dying means disciplining yourself to really hear what they are saying without being pressured to fill the void or satisfy your inner need to be comforting." He writes with insight about the importance of reflecting back the experience of the person who is dying, which brings more comfort than attempts at reassurance. He urges friends and family members to "let them lead the discussion and stay focused on their needs, not your needs." He speaks with great feeling about the importance of touch. And he writes with great compassion about comforting those who are ready to die and struggle to find God's purpose in letting them suffer.
For more information, visit Reverend Parrish's To Eternity website.
Friday, December 11, 2015
The short answer is that I wanted to see what death looks and feels like — to learn from it. I hope that I can also help someone feel a little less lonely, a little more (is there a measure to it?) reconciled."
Only the important things remain. Routines help keep you happy. Old people have the same emotions and fears as young people. Cultivate a connection to something outside yourself. Plan your death.
What working in a nursing home taught me about life, death, and America’s cultural values - Vox
This report is an excellent resource.
Americans are dying all wrong – spending too much time and money in hospitals and intensive care units receiving invasive treatments instead of enjoying those last, valuable days at home, argues Ira Byock, one of the nation’s experts in palliative care and the chief medical officer for the Providence Institute for Human Caring in Torrance, California.
Byock is calling for a revolution, where health consumers – especially patients and their families – demand a better death on their terms. That means accepting that death is a natural part of life and that at some point medicine can’t save people. It means keeping people out of pain and at home so they can be present in this poignant time that is often sacred for families.
“It means that at some point in time we have to care for their comfort, dignity and support their interpersonal, social and spiritual well being,” Byock said in a recent telephone interview. “We know how to do this. The best hospice, best palliative care and the best nursing homes give us this model and show us the way.”
Doctor wants patients to reclaim dying as part of living - Spokesman Mobile - Oct. 25, 2015
Thursday, December 10, 2015
And so, as he continued to become a shell of who he once was, I began the process of mourning him while he was still physically alive. I grieved the part of him that was no longer here. I cried for the father I wanted so badly to embrace my children, his grandchildren. I mourned for the father I wanted to ask about my career and relationships. I yearned for the Papa who would challenge my ideas about the world and would lend his wisdom about the current state of politics, society, theater and film. Our relationship had boiled down to my siblings and me comforting him as much as we were able; to help him enjoy whatever life he was still able to embrace.
Grieving the part of him that was gone while he was still alive was spiritually and emotionally healthy. I felt guilty at first because I thought it was disrespectful or blasphemous. But, I realized I was just struggling with the old cobwebs of superstition. My mourning of the parts of him that were no longer here was actually good and cathartic... I would recommend it most highly to anyone in a similar position.
The shock came however, in dealing with the finality of it all, despite the fact that I had already began the process of mourning. It is not the same as my mother's death. It is different because he was almost 91 and she was only 68. I know there are only a certain amount of years we finite beings are allowed on earth. Yet, the unique pain and emptiness that only death can bring is the same. Each morning I awake and remember like it never happened that my parent is indeed gone."
The Wisdom Daily » Grieving Loss Before a Death
Should Parents Be Allowed to Make End-of-Life Choices for Their Children?
What not to say: Everything happens for a reason. Amorette Kitsa, @funnerthanhell explains what you should not say and then tells us what you should say:
If you feel the need to say something, say, “I am so sorry that you are going through this.” Be simple, be honest, be genuine. Don't make big, flowery speeches about a divine purpose or how transitory life is. They don't need that. They need to know that you're there for them and that you care. That's all.
Look for ways to help constructively. It might not necessarily come in the form of a casserole and a psalm. Do they need a companion and distraction during chemo treatments? Are they having trouble with transportation? Do they need help with child care? Do they need help researching financial assistance? Act intuitively, keep your eyes and ears open, and help directly, where it does the most good.
Respect their boundaries. Let them decide how much help and input they want to receive from you. It is exhausting to be sick and to be expected to gratefully receive a parade of people. The parade actually feels predatory because you get people who want to snap “last photos” with you, see you for the “last time,” and hold you hostage with religious speeches that make them feel better while you feel worse. If they don't want the hassle of dealing with anyone but immediate family, respect that. If they will see you but are running low on energy, meet with them briefly. If you were never touchy-feely with them before, don't start now unless they initiate physical contact. Follow their lead.
Don't try for the “big discussion” thing. Don't force a heart-to-heart discussion for your own benefit. A gravely ill person isn't an idiot, and he or she can sense the tone of your visit. It's better to enter conversations casually and gently. Instead of “I remember you were always ... ,” which sounds stilted and final, try pointing out something that triggers an easy conversation: “There was a little boy outside who reminded me of so-and-so. Remember when we ... ”
I guess the best way that I can put it is that they're already going through hell, and they don't need for it to be any worse than it already is.
Wednesday, December 9, 2015
Katy Butler writes in the New York Times:
My father, and others like him, suffered because, at the tail end of life, Medicare continues to pay well for fix-it treatments focused unrealistically on cure and underpays for care and desperately needed home support. In his last six years, it paid more than $80,000, all told, for treatments that included a hernia repair, a pacemaker, and $24,000 for the injectable drug Lucentis which, sadly, failed to arrest the macular degeneration that was robbing him of sight. It covered a series of ambulance rides, emergency room visits and a hospital stay after he fell repeatedly on throw rugs and down the stairs, once breaking his wrist, falling on my mother, and leaving her black and blue from toe to hip.
But it paid very little for home health aides to give my mother respite and cut off, far too soon, the speech and physical therapies that helped maintain his ability to function and take pleasure in life. Under fee-for-service medicine, Medicare paid to patch him up after he fell but not to keep him from falling.
That’s why I think we need an optional new Medicare benefit. It would be called Part Q, for Quality of Life. Only those who seek it out could sign up. Democrats should love it for expanding services. Republicans should love it for expanding freedom of choice without raising costs. Those who don’t like it can leave it alone. But I’d join as soon as I turned 80 — and earlier if I developed chronic health problems.
Once I signed up, a coordinated Part Q primary care team — a concierge medical service for the 99 percent — would take responsibility for all my medical care until my death. Over time, it would help me make the transition smoothly from useful curative approaches to those focused on sustaining my quality of daily life, to “comfort care only” and, I hope, a gentle death at home.
Friday, December 4, 2015
Thursday, December 3, 2015
Morrison said that once patients who ask to hasten their death get their symptoms controlled and their spiritual needs addressed, the overwhelming majority want to keep living.
“Their choice shouldn’t be an assisted death or living with intractable suffering,” Morrison said."
Asking agonizing questions at the end of life - The Washington Post