Grief in the time of social media


[W]hen Alexis Roberts Keiner’s 9-week-old son died unexpectedly at day care in 2012, “we had to choose very quickly what kind of bereaved family we were going to be.” She shared her story with attendees of an emotional panel on grief in the digital age, which was led by ePatient advisor Liza Bernstein, at this weekend’s Stanford Medicine X conference.

“We posted on Facebook of all places, the place where you share cat videos and political rants and everything else, that our son has unexpectedly died,” she said. “Our community showed up for us in the most incredible way. We did not eat a meal alone for six weeks.”

As both an artist and a grieving mother, Keiner needed ways to express her grief. She decided to paint the box her son would be cremated in with images from his life. Explaining that she wanted to “care for this child in death” as she did in his life, she said she ultimately shared a photo of the box on social media. Almost immediately, she said, friends and family reached out from around the globe.

“The heaviness of grief is so immense that when others grieve with you they help hold up the weight,” she said. Since the death of her son, she has paid this idea forward by reaching out to others who have lost a child, mostly through Facebook, by writing letters to friends, and friends of friends, who are recently bereaved.

Patient-advocate Liz Salmi addressed the audience next, explaining how she was diagnosed with brain cancer shortly after her 29th birthday. “There’s no right way to respond to a cancer diagnosis, but my way to respond was with curiosity,” she said. “Because my background is in digital communications I immediately started blogging.”

Salmi said she intended the blog to be used as a way to communicate complicated parts of her diagnosis and treatment for family and friends. However, as patients like Salmi searched for answers, her blog quickly began picking up followers and through it and other social media channels like Twitter a community developed.

“I have become friends with so many people with brain cancer that I refer to them as my ‘brain cancer friends’. I have my real life friends. I have my work friends. I have my brain cancer friends,” said Salmi, later explaining that “these are people I tweet with daily. Even near the end of life.”

Salmi also shed light on a difficult aspect of having friends that she’s never met IRL (in real life). “Sometimes they just disappear and we end up playing the detective game to determine if they’ve died or just dropped off of social media,” she explained. In this new reality, “as more of us develop relationships with people we know online only, I wonder how we will learn to cope?” 

And what of the people who don’t regularly connect with others in the digital world, or who have historically been discouraged to do so? Michael Fratkin, MD, was there to give the physician perspective, noting that doctors often compartmentalize their personal and professional lives and that “being trained to not share is woven into the fabric of medical education.” While some may assume this helps doctors better cope with death, he argued that: “It’s the exact opposite. Our compartmentalization is actually a source of great distress, lack of empathy and misunderstanding.”

A palliative care doctor, Fratkin has had about 2,000 patients die over the last 11 years, and when patients died it often felt as if they had just “disappeared into the blackness.” But things are now changing, he said, as the digital world offers important tools to help him connect with patients and grieving families.

“Social media has been very important to the work I’ve been doing,” he said. “It’s woven me more intimately into the community relationships that the people that I care for exist in.”

Bernstein, meanwhile, drew on her personal history of multiple losses (starting with the suicide of her father when she was 4 years old) and experiences in digital communities including #BCSM (breast cancer social media), to envision, curate, and convene this panel. Bernstein said her goal was to “bring humanity, dignity, kindness, and a healthy sense of humor to this sensitive but important topic.”

Complete Article HERE!

When to Consider Hospice Care

According to a new study, many people wait too long to get special end-of-life care

By Lauren F. Friedman

[M]any patients near the end of their lives wait too long to enter hospice care, reports a new study published in the Journal of the American Geriatrics Society.

People who put off hospice care—in which attempts to cure a disease are usually stopped and replaced with treatments just for pain and suffering—might spend months in and out of hospitals, with their families struggling to take care of them. Hospice is specifically designed to address such issues with drugs and other interventions, which can increase patients’ quality of life toward the end of life.

“At some point, patients and their families and doctors realize that hospice is appropriate, but that happens perhaps later than it should,” says study author Thomas Michael Gill, M.D., a professor of medicine, epidemiology, and investigative medicine, and the Humana Foundation professor of geriatric medicine, at Yale University. “When folks are referred to hospice only in the last days of their life, it’s difficult to have a meaningful benefit.”

For nearly 16 years, Gill and a team of researchers from the School of Medicine at Yale University followed 754 people who were all over 70 years old when the study began. Even though more than 40 percent of the 562 patients who died during the study entered hospice care during the last year of their lives, the median time spent in hospice was less than two weeks.

Many of their most debilitating symptoms—including pain, nausea, depression, and shortness of breath—decreased substantially only after hospice began. That means many patients might have been suffering needlessly for months, says Diane Meier, M.D., the director of the Center to Advance Palliative Care and a professor of geriatrics and palliative medicine at The Mount Sinai Hospital.

Health crises, emergency-room visits, and hospitalizations can become routine toward the end of life, and “that is a very distressing and stressful experience for patients and family members,” says Meier. “Remaining in your own home [something hospice makes possible], a familiar place with familiar people, is safer and offers better quality of life.”

Here’s what you need to know about hospice care, and how to know when it’s time to begin considering it, for yourself or a loved one

What Is Hospice Care?

Hospice is a type of end-of-life care where the focus shifts from medical interventions aimed at a cure to palliative care, in which comfort and support for patients and their families are the main goals. It generally includes medical and nursing care as well as counseling and social services. 

According to the National Hospice and Palliative Care Organization, a specialized team—working in a patient’s home, a nursing home, or a hospice facility—has been trained to treat “all types of physical and emotional symptoms that cause pain, discomfort and distress.”

Hospice has been covered by Medicare since 1982 (though it has become more widely used only recently).

To initiate the hospice benefit, two physicians (or other healthcare providers) have to certify that a patient is terminally ill with less than six months to live—something that can be difficult to predict in many cases, say Meier and Gill. Patients can and do leave hospice at any time, because their condition stabilizes, for example, or because they want to pursue curative treatments again. Hospice care can also be extended beyond six months.

“Many people are fearful that if they choose hospice, they won’t be able to return to mainstream medicine should they improve or new treatments become available—that’s not true,” says Meier. “Hospice is not a one-way street.”

And some evidence suggests that hospice patients actually live just as long or even longer than similarly ill patients who are not in hospice.

Yet the persistent misconceptions about hospice, says Gill, may be part of what keep people from seeking it out sooner.

When Is It the Right Time for Hospice?

For people with terminal conditions (which includes not only some cancers but also dementia, terminal heart disease, lung disease, frailty, and more), there should be an ongoing discussion taking place with their doctor about their goals and priorities, says Gill—ideally long before hospice is being broached.

“Often patients will say ‘I’m more interested in the quality rather than the quantity of my remaining life,’” he says, and that can help inform future discussions about end-of-life care.

But if you have not already discussed the possibility of hospice with a doctor, either for yourself or a loved one, there are two key signs that suggest it might be time to broach the topic for someone nearing the end of life, Meier says.

First, if a patient is having increasing difficulty taking care of themselves and struggling with basic tasks such as walking, getting out of a chair, bathing, dressing, and using the toilet, hospice care is designed to help with all of those things.

Second, symptoms such as severe pain, shortness of breath, hopelessness, depression, and profound fatigue are all treatable in hospice, says Meier. In fact, “most of them can be improved or eliminated,” she says.

In the end, “a patient’s trajectory is most important,” says Gill. “In terms of daily functioning, are they heading downhill as opposed to being relatively stable?”

These conversations can be difficult for patients, their families, and their doctors—which is why people often put them off until the last moment, sometimes sacrificing quality time at the end of life for dubious interventions or unnecessary hospitalization.

But the benefits to considering hospice care sooner are clear. A patient with terminal cancer, featured in a 2014 Consumer Reports article, called entering a hospice program—nearly nine months before he died—“one of the best things that’s happened to me in the last I don’t know how many years.”

“It’s challenging to have honest discussions with patients and families about death and the dying process,” says Gill. “But leaving the conversation until the very end makes it more difficult.” 

For more information, see Consumer Reports’ guide to caregiving and end-of-life care.

Complete Article HERE!