When loved ones die at home, family caregivers pay

Increasingly, people die at home, that sounds like a good thing. Over the years, Americans have been telling researchers and anyone who will listen that this is how they want to go: surrounded by people who loved the familiarity of their own homes.

But dying at home really best for everyone?

About a quarter of all US deaths now occur at home. Reflecting an increase of 29.5 percent from 2000 to 2014, according to the Centers for Disease Control and Prevention. From time to time, the percentage of deaths in hospitals, home care and long term care facilities has decreased.

From the patient's perspective, this is acceptable. Who does not want to die in bed of their own and are not connected to the machine in the intensive care unit?

But it would be a mistake to see this trend as an entirely benevolent. On the other hand, social policy and financial concerns are pushing people off seeking death in the home regardless of the toll that leads to family caregivers.

Money is the reason why.

End-of-life care is a big-ticket item. Almost 30 percent of Medicare’s annual budget is spent on individuals in the last 12 months of their lives. The place of death has a considerable impact on those costs. Dying at home is much cheaper than dying in a hospital or nursing home.

If someone wanted to trim Medicare costs, one of the easiest ways would be to push the benefits of dying “off-site” ― at home or in a hospice setting. And that’s precisely what Medicare has done. The recent palliative care movement in the U.S. has been fueled largely by Medicare’s support and funding. When Congress approved the Medicare hospice benefit in 1983, the number of hospice admissions immediately increased. Because the benefit emphasizes home care, many hospice services built around an inpatient model changed the way they operated so they could qualify for reimbursement. As of 2014, almost 60 percent of patients in hospice were receiving that care ― and dying ― in their own homes.

But patients weren’t the only people affected by this shift. To qualify for Medicare-supported hospice, a doctor must certify that the patient meets four important criteria: They must have a home, a terminal diagnosis that is expected to claim their life within six months, a willingness to receive only palliative care going forward and a full-time primary caregiver.

bear the burden of family caregivers.

Family caregiving has imposed a huge toll on the 34 million people who provide unpaid care to older Americans. family members who care for elderly relatives and partner hospitals have higher rates of chronic disease and stress and are at greater risk for depression, social isolation and financial losses from non-friends-their caregiving, according to the National Institutes of Health. Despite their condition has a name: the guardian syndrome.

A Stanford University study previously reported that 40 percent of family caregivers for Alzheimer's patients - in charge can last 10 to 15 years old - died from stress-related disorders before him in custody they are not. family caregivers provide about $ 500 billion in unpaid services, the estimated Rand Corp., and spend an average of 253 hours a month to take care of the elderly. That's about working 60 hour-a-week.

Now, with 10,000 Americans turning 65 every day, the burden of shepherding a loved one through death is landed on the shoulder more family caregivers.

Atlanta reporter Joy Johnston spoke from first-hand experience to take care of her dying mother at home two years ago. Johnston said he had never seen so much as a pet would die before she sat at the bedside of his mother for more than a month in 2015.

"Dying at home may be great for the dying. It's hard to say, because no one has bothered to fill out customer satisfaction surveys of other parties," he wrote on the website Caregiver Space. "As family caregivers, hospice home experience is not always rosy as it is depicted. It can be scary, soul-draining nightmare that no amount of therapy will ever be able to fix."

His mother, 75 and diagnosed with colon cancer metastasis, a widow who lives alone in New Mexico. He has outlived friends and family and had just one child, Johnston, who came to take care of his mother and respect her wishes to die at home. Johnston supported by hospice services are delivered through an assistant for an hour every day, weekdays only.

"They took my vitals mother and ran down a checklist of questions," Johnston, 42, told HuffPost. "I know it's a checklist as they read of every time - and always the last question addressed to me. They would always ask me how I was doing."

She was not doing well. Johnston was changing her mom’s colostomy bag, bathing her mother’s frail body, changing bedding and checking for bed sores, preparing food and feeding her mom, monitoring her pain levels and comforting her. Alone.

Over the course of a month, her mother grew progressively worse. “I [had] listened to her death rattle all night,” Johnston said, describing her mother’s last morning. “I sat with her, held her hand. ... She took a few ragged breaths and her mouth froze, half-open.”

“I was there alone. I felt so alone. I called hospice. ... They had said to call them and they would come over. But they were having a goodbye party for a co-worker so nobody got there for more than an hour,” Johnston said. She remembers standing by the window waiting for someone to come.

“It was terrible,” she said. “All of it.”

“Dying at home as some beautiful closure? ... It’s just a fairy tale.”

Loving mom isn’t enough.

Of course not all see it that way. Despite the difficulties, many caregivers HuffPost spoke to said they intended to walk the last mile with their loved ones.

And from the perspective of someone who studies these things, J. Russell Hoverman said, “A good death is the end of a life but also closure for a family, an event made difficult by hospitalization, especially deaths in the ICU.”

The Austin, Texas, oncologist noted that data indicate dying at home is more satisfying and comfortable for the patient ― as long as proper pain management is in place. But that is “not to discount the stress involved in home caregiving for the caregivers,” he said.

Family members should not be left alone to handle the situation. High-quality hospice care “with perhaps supplemental sitters” is critical, Hoverman said.

The rising numbers of Americans struggling to care for their dying loved ones, he said, may be more “a reflection of the perverse incentives in our society and dispersion of families” than it is the best choice for anybody.!