If you’re thinking about sending your parent to a nursing home, it’s time to seriously reconsider.
Facilities for the elderly, originally created as a by-product of an effort to free up hospital beds, haven’t improved much since then. Behind their beige-coloured, soup-smelling facades lurks an even nastier problem: Our society has absolutely no idea what to do with its elderly.
Once an ageing parent loses the ability to function on her own, it becomes the child’s responsibility to ensure she’s taken care of. For many, that means finding an atmosphere that guarantees her safety.
But those priorities are completely misplaced, at least according to Atul Gawande. In his new book, Being Mortal, Gawande describes how our misguided choices have trapped the elderly in places of boredom, depression, neglect, and abuse.
There might be a solution yet. Gawande suggests that instead of making healthcare decisions based on how they make us feel (i.e.: Is my loved one safe?) we should make decisions based on how they will affect our family member’s quality of life.
This means choosing a facility that will also respect these choices. Instead of selecting a facility that will force an older man who has fallen recently to use a wheelchair, for example, pick a place where a staff member will ask him how much being able to walk — even with the help of a cane or walker — means to him. Preserving that ability could mean all the difference in his life, even if it means he’s more at risk of a slip.
Gawande speaks from experience, both personal and professional: When he’s not performing surgery at Brigham and Women’s Hospital in Boston or writing for the New Yorker, Gawande teaches at the Harvard School of Public Health and Harvard Medical School. When his own father (also a surgeon) was diagnosed with a massive spinal tumour, Gawande helped him grapple with a variety of end-of-life healthcare decisions, from when he should stop working to when he should go under the knife (if at all).
Making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does.
Healthcare spending on the elderly is immense, but we shell out the most on our deathbeds. About 25% of all Medicare spending occurs in a person’s last year of life, according to a recent review in the journal Health Affairs.
While we spend the most money trying to stave off death, we waste precious time we could have used to make life as good as it can be in our final years. And life can be good — something that’s finally becoming more of a focus in eldercare. “Making lives meaningful in old age is new. It therefore requires more imagination and invention than making them merely safe does,” writes Gawande.
Several people put that imagination and invention into action by rejecting the traditional nursing home model and creating totally new facilities for the elderly. One, the Leonard Florence Center for Ageing, is a new kind of facility with private rooms and caregivers who focus on small groups of residents rather than giving the same generic services to hundreds of patients.
Gawande profiles a resident of that home — Lou Sanders, an elderly man who wants desperately to maintain his privacy and is overjoyed to discover that the Florence Center doesn’t force its residents to have roommates. One difference between these new kinds of facilities and traditional nursing homes are that they often provide hospice, or palliative care, meaning they focus on maintaining or improving someone’s quality of life when they are approaching the end.
And these new types of facilities also happen to cost about the same thing as the old ones. The average monthly cost of living in a typical nursing home is $US6,600. Another type of new facility based on the Florence Center model are the Tupelo Green Houses, which cost $US6,720 per month; Medicaid covers the cost for 8 out of 10 residents.
These new kinds of facilities remain far from the norm, however. One in three people who are admitted to a nursing home will die within a year, yet fewer than 15% receive hospice care. Worse still, the facilities that do provide hospice are rarely checked to ensure they’re meeting basic health and safety guidelines.
A 2013 investigation by the Department of Health and Human Services found that just one in five hospice care facilities had been reviewed and passed inspection in the past six years. Thanks to a new law signed Monday by President Obama, hospice inspections must take place every three years starting in January.
Even with more inspections of nursing home and hospice care facilities, though, Gawande suggests there’s a cultural shift that needs to take place to prevent thousands of older people from serving out their last years in facilities with no privacy, no independence, and little reason to live.
That shift is based on the idea that medical professionals and family members must be willing to have a dialogue with the elderly people they want to help. Rather than assuming they need one thing, a better idea would be to simply ask them, says Gawande.
When Gawande’s father becomes ill with his tumour, he realises it’s time for their own dialogue. He asks him what trade-offs he is willing to make — and not make — to try to stop what is happening to him. Gawande tells him about another patient’s father, a man who’d also had a spinal cord tumour and said that as long as he could still watch football on TV and eat chocolate ice cream, he had a reason to live. Gawande’s father did not feel the same. If the tumour or the surgery left him paralysed — a condition that would require 24-hour-care — his father didn’t want it. “Let me die instead,” he tells him.
While difficult, these conversations are the ones that will allow healthcare workers, doctors, surgeons, and family members to make the best decisions for their loved ones. Asking — and listening — are difficult tasks, but they could make a life-changing difference.
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