Tagged Home Health Care

What The Trump Home Dialysis Plan Would Really Look Like

Mary Epp awoke from a deep sleep to the “high, shrill” sound of her dialysis machine’s alarm. Something was wrong.

It was 1 a.m. and Epp, 89, was alone at home in Marion Junction, Ala. No matter. Epp has been on home dialysis since 2012, and she knew what to do: Check the machine, then call the 24/7 help line at her dialysis provider in Birmingham, Ala. to talk to a nurse.

The issue Epp identified: Hours before, a woman she hired to help her out had put up two small bags of dialysis solution instead of the large ones, and the solution had run out.

The nurse reassured Epp that she’d had enough dialysis. Epp tried to detach herself from the machine, but she couldn’t remove a cassette, a key part. A man on another 24/7 help line run by the machine’s manufacturer helped with that problem.

Was it difficult troubleshooting these issues? “Not really: I’m used to it,” Epp said, although she didn’t sleep soundly again that night.

If policymakers have their way, older adults with serious, irreversible kidney disease will increasingly turn to home dialysis. In July, the Trump administration made that clear in an executive order meant to fundamentally alter how patients with kidney disease are managed in the U.S.

Changing care for the sickest patients — about 726,000 people with end-stage kidney disease — is a top priority. Of these patients, 88% receive treatment in dialysis centers and 12% get home dialysis.

By 2025, administration officials say, 80% of patients newly diagnosed with end-stage kidney disease patients should receive home dialysis or kidney transplants. Older adults are sure to be affected: Half of the 125,000 people who learn they have kidney failure each year are 65 or older.

Mary Epp receives a telehealth consult from a team at a dialysis clinic in Birmingham, Ala., 90 miles away from her home in Marion Junction. Epp does peritoneal dialysis at home every night while she sleeps.(Courtesy of the University of Alabama at Birmingham)

Home dialysis has potential benefits: It’s more convenient than traveling to a dialysis center; recovery times after treatment are shorter; therapy can be delivered more often and more readily individualized, putting less strain on a person’s body; and “patients’ quality of life tends to be much better,” said Dr. Frank Liu, director of home hemodialysis at the Rogosin Institute in New York City.

But home dialysis isn’t right for everyone. Seniors with bad eyesight, poor fine-motor coordination, depression or cognitive impairment generally can’t undertake this therapy, specialists note. Similarly, frail older adults with multiple conditions such as diabetes, arthritis and cardiovascular disease may need significant assistance from family members or friends.

The burden of providing this care shouldn’t be underestimated. In a recent survey of caregivers providing complex care to family members, friends or neighbors, 64% identified operating home dialysis equipment as hard — putting this at the top of the list of difficult tasks.

What experiences do older adults have with home dialysis? Several seniors doing well on home-based therapies were willing to discuss this, but they’re a select group. Up to a third of patients who try home dialysis end up switching to dialysis centers because they suffer complications or lose motivation, among other reasons.

It takes determination. Jack Reynolds, 89, prides himself on being disciplined, which has helped him do peritoneal dialysis at home in Dublin, Ohio, seven days a week for 3½ years.

With peritoneal dialysis, the therapy that Epp also gets, a fluid called dialysate (a mix of water, electrolytes and salts) is flushed into a patient’s abdomen through a surgically implanted catheter. There, it absorbs waste products and excess fluids over several hours before being drained away. This type of dialysis can be done with or without a machine, several times a day or at night.

About 10% of patients on dialysis choose peritoneal therapy, including 18,500 older adults, according to federal data.

Reynolds prefers to administer peritoneal dialysis while he sleeps — a popular option. His routine: After dinner, Reynolds sets out two bags of dialysate, ointments, sterile solutions, gauze bandages and a fresh cassette for his dialysis machine with four tubes attached: two for the dialysate bags, one for his catheter and one to expel dialysate at the end.

Altogether, it takes him 23 minutes to gather everything, clean the area around his catheter and sterilize equipment; it takes about as much time to take things down in the morning. (Yes, he has timed it.) Just before going to sleep, Reynolds hooks up to his dialysis machine, which runs for 7.5 hours. (The amount and frequency of therapy varies according to an individual’s needs.)

“I live a normal, productive life, and I’m determined to make this work,” Reynolds said.

Jack Reynolds has been doing peritoneal dialysis at home in Dublin, Ohio, seven days a week for the past 3½ years. Each night he uses two bags of dialysate, ointments, sterile solutions, gauze bandages and a fresh cassette for his dialysis machine with four tubes attached: two for the dialysate bags, one for his catheter and one to expel dialysate ready to be discarded.(Courtesy of Jack Reynolds)

It took five surgeries to successfully implant a catheter on Reynolds’ left side because of scarring from previous abdominal surgeries. He has had to replace three malfunctioning dialysis machines and learn how to sleep on his right side, so the tube connected to his catheter isn’t compressed.

In the morning, his wife, Norma, cleans the area around his catheter, applies a gauze bandage and tapes an 18-inch extender attached to the catheter to his chest. He could do this himself, Reynolds said, but “I wanted her to have some part in all this.”

Training is demanding. In December 2003, when Letisha Wadsworth started home hemodialysis in Brooklyn, N.Y., she was working as an administrator at a social service agency and wanted to keep her job. Doing dialysis in the evening made that possible.

Home hemodialysis requires one to two months of education and training for both the patient and, usually, a care partner. With each treatment, two needles are stuck into an access point, usually in a vein in a patient’s arm. Through lines connected to the needles, blood is pumped out of the patient and through a machine, where it’s cleansed and waste products are removed, before being pumped back into the body.

Only 2% of dialysis patients chose this option in 2016, including 2,800 older adults.

Letisha Wadsworth began home hemodialysis 15 years ago in an effort to keep her job as a social service agency administrator. Doing dialysis at her Brooklyn, N.Y., home in the evenings made that possible.(Courtesy of Letisha Wadsworth)

The training was “rigorous” and “pretty scary for both of us,” said Wadsworth, now 70, whose husband, Damon, accompanied her. “We learned a lot about dialysis, but we still didn’t know about issues that could arise when we got home.”

Issues that Wadsworth has had to deal with: learning what to do if air got into one of the lines. Adjusting the rate at which her blood was pumped and flowed through the machine. And, recently, getting a medical procedure to fix the access site for her needles, which had clotted with blood.

Another issue: finding space for 30 large boxes of supplies (fluids, filters, needles, syringes and more) that Wadsworth orders each month. They’re stored in two rooms in her house.

Over the years, Wadsworth has talked a lot to family members and friends about kidney failure and dialysis. “I wish I’d known about the relationship between blood pressure and kidney failure a lot earlier,” she said. “I guess I thought all black people have high blood pressure: It just comes with the territory as opposed to what we can do to prevent it.”  (High blood pressure puts people at risk of kidney failure.)

In 2013, Wadsworth had a stroke, which temporarily paralyzed her left side. “I used to set up the [dialysis] machine, but now I use a walker and I can’t really stand and set everything up the way I used to.” Damon, 73, does this for her.

Wadsworth’s current routine: Dialysis starts around 8 p.m. and goes for five hours, four days a week, in a dedicated room in her house. She passes the time eating dinner, watching TV, reading on her Kindle, talking on the phone, visiting with friends or playing Scrabble with Damon.

Like most patients on home dialysis, she gets blood tests once a month and visits her nephrologist two weeks later to review how she’s doing. A nurse, dietitian and social worker are also part of her team at the Rogosin Institute.

Damon, a psychotherapist, admits it isn’t easy to stick his wife with needles. “A lot of times, it hurts her, and it’s not fun for me to be the person doing that,” he said. “But it’s just part of my life now. We’re thankful that home dialysis exists and we’re lucky enough to be able to do it.”

It can be overwhelming. Sharon Sanders, 76, thought she had the flu last year when she had trouble breathing and keeping food down. But when she landed in the hospital, doctors told her that her kidneys were shutting down.

About half of the time, this is what happens to people who end up on dialysis: They learn suddenly that their kidneys aren’t working reliably anymore.

Like many people, Sanders was shocked. After going to classes and talking to a niece who’s a registered nurse, she decided on peritoneal dialysis. “I liked that I can do it at home, by myself, and I don’t have to stick myself with needles,” she said.

Training took about a week at a clinic in Mesa, Ariz. “It came very easy for me,” said Sanders, who lives in Gold Canyon, Ariz., and who began her nightly routine of six hours of peritoneal dialysis, five days a week, last August.

She doesn’t pay anything for the therapy, which is covered for her by Medicare and Tricare insurance, a benefit Sanders has because of her husband’s military service. (He died in 2017). Medicare Part B pays 80% of the cost of dialysis at home, and supplemental coverage (including, for instance, a Medigap policy, a retiree policy from an employer or Medicaid) generally picks up the remainder.

Sanders is a frequent visitor to Home Dialyzors United Facebook support group and another site, Home Dialysis Central. Another site, My Dialysis Choice, is a useful resource for people deciding whether home dialysis is right for them.

Even though Sanders, who has arthritis of the spine, doesn’t find her dialysis routine especially burdensome, she sometimes gets overwhelmed. “I don’t have any energy too much of the time,” she said. “I find myself thinking, What’s my purpose for doing this? Is it worth it if we’re all going to die anyway?’”

Finding needed help. Until last November, when her husband of 68 years died, Mary Epp relied on him to get her ready for peritoneal dialysis, which she receives every night while she sleeps for nine hours.

Now, an aide comes in a 7 p.m. to help Epp take a bath and set things up before dialysis begins an hour later. Another woman comes in at 5 a.m. to take her off dialysis, clean everything up and fix her breakfast.

“I’ve gotten a lot more feeble than I was” when home dialysis began in 2012, said Epp, who admitted she was “terrified” when a physician diagnosed her with kidney failure.

But the benefits of home therapy, which is overseen by a team at a dialysis clinic 90 miles away in Birmingham, remain worth it, she said. “You just go to bed and wake up the next morning and you’re ready to go and meet the day.”

Going Down Fighting: Dying Activist Champions ‘Medicare For All’

When Santa Barbara lawyer-turned-activist Ady Barkan settled in to watch the second round of the Democratic presidential primary debates late last month, he had no idea his story would be part of the heated discussion.

Barkan, 35, who has amyotrophic lateral sclerosis, also known as ALS or Lou Gehrig’s disease, watched from his wheelchair as Massachusetts Sen. Elizabeth Warren described how he and his family had to raise money online to help pay for roughly $9,000 a month in health care costs not covered by his private health insurance.

“The basic profit model of an insurance company is taking as much money as you can in premiums and pay out as little as possible in health care coverage,” Warren said. “That is not working for Americans.”

But for Barkan, the moment was not about him.

“Elizabeth Warren’s point wasn’t just to mention my name, it was to call attention to the ways our broken health care system is hurting people across the country,” he said in an email interview.

Proponents of “Medicare for All” argue that a single, publicly funded insurance plan is the most effective and equitable way to deliver health care to all Americans. The concept, and whether it is politically feasible, is a dividing line among Democratic presidential candidates.

Barkan, a community organizer for the progressive advocacy group Center for Popular Democracy, was diagnosed with the neurodegenerative disease in 2016 at age 32. ALS causes muscles to atrophy, and patients to lose control of their bodies. Eventually, they are no longer able to breathe without assistance from a ventilator.

Barkan had already made a splash on the national political stage a few years earlier because of his campaign to persuade the Federal Reserve to focus on full employment and rising wages.

He and his wife, Rachael Scarborough King, a University of California-Santa Barbara English associate professor, had welcomed their first child earlier that year. As he put it, “life was perfect.” But the diagnosis plunged him into depression as he realized he would likely not live long enough to see his son grow up. People with ALS live an average of two to five years after diagnosis.

His fight for better access to health care began in 2017, when he protested the GOP tax cut bill on the grounds that removing that revenue from the federal government would make it more difficult to fund disability and Medicaid payments.

On the way home from the protest, he ended up on the same flight with former Arizona Sen. Jeff Flake, a Republican, and used the opportunity to have a gentle but pointed conversation about how the bill would devastate families like his. The exchange, captured on video, went viral and landed him more opportunities to share his story. By then, he needed a cane to walk and could no longer hold his baby.

When he was tapped to deliver the opening statement for a congressional hearing on Medicare for All in April 2019, Barkan could no longer speak and delivered his testimony via computer.

Barkan’s delivery at the hearing was stirring, even to some advocates who oppose his aims. Although Grace-Marie Turner, president of the Galen Institute, a public policy think tank that opposes increased government involvement in health care, testified at the same hearing against Medicare for All, she said she came away with great respect for Barkan.

“It is tragic that Ady is afflicted with ALS,” she said. “His ceaseless dedication to his cause and to his family, despite this devastating illness, shows true heroism.”

Barkan now requires round-the-clock home health aides, who account for the $9,000 out-of-pocket cost that Warren mentioned in the debate.

He spoke with California Healthline’s Anna Almendrala about the case for Medicare for All. He responded to email questions with a device that uses lasers to track his eye movements in order to type.

The following interview has been edited for length and clarity.

Q: Why do you think that Medicare for All, which was once considered fringe, is now a major part of the debate among Democratic nominees?

We’re the richest nation in the history of the world, and yet people are going bankrupt from their medical bills. Clearly, people’s frustration with the health care system is reaching a boiling point. Tens of millions of people don’t have any health insurance. Millions more have to fight with their insurance company every day, when those companies try to deny coverage for necessary care.

Q: What did you think about the debate, especially the portion in which candidates were asked about raising taxes on the middle class to pay for Medicare for All?

When I saw the moderate candidates argue that Medicare for All will never pass because Republicans are going to call us socialists, or attack us for raising taxes, that makes me sad. It’s an argument that doesn’t give voters enough credit. Yes, Medicare for All will probably mean a new tax, but that tax will be less, way less, than how much we’re spending on health care bills. Let’s make that argument and treat voters like adults.

Q: What do you think about California Sen. Kamala Harris’ health care plan, which would allow more people to opt into Medicare while also giving private insurers the chance to participate?

It raises a lot of questions for me, like why there’s such a long phase-in to cover everybody, and why Sen. Harris seems insistent on preserving a role for the private insurance industry. One thing I think candidates haven’t had to do so far is make a case for why private insurance companies are good, how they actually make life better for doctors or patients.

Q: While Medicare for All is becoming a more mainstream idea, politically it remains a long shot, even in a state like California. In its absence, what other options would you support?

There are various incremental reforms that would still be important improvements over the status quo. And I am not sure that incremental reforms will be more politically viable than Medicare for All.

The insurance industry will oppose a public option just like they’ll oppose single-payer. So, I guess I don’t really accept the premise of the question. But, putting that aside, I support any solution that gets more people the health care they deserve.

Q: How are Rachael and your son, Carl?

Rachael is enjoying teaching and looking forward to having time off when the new baby comes in November. That’s some news for your readers — she’s pregnant with our second!

Q: How are you doing physically, emotionally and mentally?

ALS is exhausting, infuriating and inserts itself into every moment of my life. I recently lost the ability to drive my wheelchair, so other people have to do it for me. But there are always glimmers of hope.

Very soon I will have access to eye-drive technology, which will allow me to drive my wheelchair with my eyes using my computer.

Q: What does it feel like to see yourself, struggling with a debilitating disease, as one of the most prominent faces of the Medicare for All movement?

I am glad to be able to use my personal tragedy to support transformative change, although I would obviously give up all the attention and accolades in a heartbeat if I could be healthy. I’d much prefer to make impact the way I was before my diagnosis.

Finding Ways to Keep Patients at Home

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Credit Getty Images

My patient was a proudly elegant woman in her 70s who lived alone. Her Parkinson’s disease had so severely restricted her ability to move that it would take her hours to get dressed in the morning. And leaving the house was virtually impossible, so she had to rely on neighbors and friends from her church community for help with shopping.

She was adamant that she wouldn’t want aggressive treatment to keep her alive. She’d been hospitalized many times, and she told me she wouldn’t want to take a hospital bed that would be better used for someone else. So she dutifully completed an advance directive that made her wishes clear. It said that she would not want to be kept alive on a breathing machine, and that she wouldn’t want cardiopulmonary resuscitation if her heart stopped. She also wouldn’t want to be fed through a tube if she was no longer able to eat. What was most important to her, though, was staying at home and avoiding a nursing home.

As a palliative care physician, I always urge my patients to complete advance directives. These are legal documents that tell doctors and family members what treatment they do and don’t want if they’re ever unable to make decisions for themselves. That’s important, because if I don’t know what my patients want, the default is to do everything to keep them alive, which typically results in unnecessary and costly treatment. Indeed, one of the most often-cited arguments for advance directives is the fact that 25 percent of Medicare spending is for people in the last year of life.

When my patient developed a cough and a fever, likely a result of pneumonia, she became too confused to make decisions for herself. Thanks to her advance directive, her family knew that she didn’t want aggressive treatment, and we knew that she wanted to stay home. So we arranged for short-term daily nursing visits and enough support so that, with additional help from her family, she was able to remain at home as she wanted.

I thought that she would get worse without aggressive treatment in the hospital, and that we would enroll her in hospice, so I was surprised when she began to improve. Soon she was able to make decisions for herself and even returned to the same level of independence that she’d had before she became sick. That’s when it became obvious to me that advance directives have their limits.

My patient lived, as many people with chronic, serious illnesses do, on a thin ledge of independence. The smallest nudge — a few missed medication doses, the loss of just a little support — left her entirely vulnerable. In my patient’s case, that nudge came two months later, when her neighbors ran into financial problems and their daughter, who had been doing the grocery shopping for my patient, had to take an after-school job. My patient valued her independence more than anything, so whenever her neighbors and her out-of-state family checked on her, or when we called her, she told us all that she was fine.

For three weeks, my patient subsisted on nothing but white rice, because that was all she had in the house. When her grand niece called us and asked us to check on her, we sent a social worker and a nurse to visit her. We found her housebound, surrounded by garbage, with no clean laundry and no toilet paper.

Despite our best efforts, we couldn’t do enough to keep her safe at home, so she went to live in a nursing home, where she spent the last two months of her life. An advance directive had helped her stay out of the hospital, as she had wanted. And perhaps it even made a bed available for someone who needed it more, as she’d hoped. But that piece of paper didn’t help her to live out her final months with the sort of comfort and dignity that she deserved.

When we talk about advance directives and reducing costly and unnecessary treatment at the end of life, we should also be talking about ways we can provide more support. We need to make sure that people like my patient have access to the kinds of care that can help them remain safely and comfortably at home.

Now when I help my patients complete an advance directive that defines the treatment they don’t want, we also discuss what support they’ll need in the future. I talk with my patients and their families about what’s going to be necessary to keep them safe and comfortable in their homes today, and next month and — if they’re lucky — for the next few years.

Those sorts of discussions are essential, but they’re not enough. We also need to revise the way we think about advance directives. Advance directives help reduce health care costs at the end of life by avoiding aggressive treatment, but that’s not the most compelling argument for them. It’s not enough to reduce what we spend on aggressive treatment at the end of life; we also need to spend those resources in better ways.

For someone around my patient’s age, the average cost of a hospitalization is about $13,000. So Medicare should have been willing to spend $13,000 to keep her safe and comfortable at home. That sum would have been more than enough to pay for a visiting nurse to continue to check on her after she recovered from pneumonia and a home health aide to help her with bathing and dressing. And it could have paid the girl next door to do her grocery shopping so a frail elderly woman didn’t need to subsist on white rice because it was the only food she had.

We should have been able to provide all of that help. My patient was adamant that she didn’t want to spend her last days of life in a hospital, taking up a bed that someone else could use. Let’s make sure that when people like her forgo costly treatment at the end of life, they get something in return.

Dr. David Casarett is a professor at the University of Pennsylvania Perelman School of Medicine and the author of “Stoned: A Doctor’s Case for Medical Marijuana.”

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