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“My time to live”: through a new program, kidney patients receive palliative care, dialysis “until the end”

After a decade of living with chronic kidney disease, Vonita McGee knows that her body is exhausted.

At the age of 63, McGee underwent dialysis three times a week at a Northwest Kidney Centers location near her home in Burien, Washington, to purge trash and water from her blood. She has endured the placement of more than a dozen ports or access points in her arms and chest as the sites have become scarred and unusable. Doctors performed an operation late last month to install another connector near her left elbow, but no one is sure it will last.

“Because of the scar tissue, I was told this is my last viable approach,” she said.

Without dialysis on, McGee knows she will be dead in days or weeks. But unlike many others nearly 500,000 U.S. patients needing dialysis, McGee said it helped make peace with the process.

“I know things are coming,” she said. “I am in awe of death, but I am no longer afraid of it.”

This is largely due to a novel effort in Washington state to embed palliative care in a kidney center whose clinics treat patients with kidney disease; and to connect dying patients to hospice care without forcing them to forego the convenience that dialysis can still offer.

Traditional hospice services require kidney patients to abandon dialysis, a decision that accelerates death and is almost inevitably associated with acute symptoms such as muscle cramps and nausea.

McGee says the specialist palliative care services at Northwest Kidney Centers helped her manage problems with dialysis and kidney disease. “I am in awe of death, but I am no longer afraid of it,” she says. (Dan DeLong for KHN)

McGee is one of 400 patients enrolled in the nation’s premier palliative care program since 2019, housed at Northwest Kidney Centers, a Seattle-based operation with clinics across the region. The organization founded the first dialysis center in the United States – and around the world – almost 50 years ago.

Chronic kidney disease (CKD) has five stages, from mild damage to organ function in stage 1 to complete kidney failure in stage 5. Most patients begin preparation for dialysis – and kidney failure – in stage 4. Dialysis does not cure the kidneys Fail. The only other treatment option is an organ transplant.

Dialysis patients typically face stressful physical, emotional, and spiritual symptoms throughout their treatment, ranging from pain, shortness of breath, and severe itching to depression and panic. Symptoms can get worse over the years.

But only a fraction of these patients 4% or lessto ever receive specialized palliative care that can effectively address these issues, said Dr. Daniel Lam, the University of Washington nephrologist and palliative care practitioner, who started the program with the help of a two-year grant from the Cambia Health Foundation of $ 180,000. Attention to palliative medicine in nephrology, for example, lags behind its application to advanced cancer.

This applies in particular to black patients and other minorities, who need dialysis disproportionately more often than white patients, but who are far less likely to receive high-quality palliative or terminal care.

“We are trying to fill this current and forecast gap,” said Lam. “We ask people how they want to live their life and what is most important to them.”

If McGee’s condition worsens to the point where she has a forecast of six months or less, she will be a candidate for a related partnership between the Kidney Center and the nonprofit Seattle Providence Hospice, This would enable her to continue receiving dialysis after starting hospice care.

While the goal of both hospice and palliative care is to relieve pain and symptoms, the hospice has traditionally been viewed as comfort care with no intent to treat or cure the underlying condition. The nuance of dialysis is that it is central to maintaining the body function of a kidney patient; abrupt discontinuation leads to death within days.

“The goal of this program is to enable a smooth transition from curative dialysis to the end of life,” said Mackenzie “Mack” Daniek, who co-runs the hospice.

Most dialysis patients are faced with the harrowing choice between continuing on dialysis or using hospice services. That’s because Medicare hospice benefits, which came into effect in 1983, offers palliative care and support for terminally ill patients who have six months or less to live – and who agree to forego curative or life-extending care.

This rigid requirement could change in the future. The Centers for Medicare & Medicaid Services have one experimental model This will enable some patients to receive simultaneous care from next year. But for now, Medicare won’t pay for dialysis and hospice care at the same time for patients with a terminal diagnosis of kidney failure.

Medicare provides hospices at a daily rate per patient, typically $ 200 or less, to cover all end-stage diagnosis-related services. Dialysis can easily cost $ 250 per session, meaning that only the largest hospices, those with 500 or more patients, can cover the cost of concurrent care. Just about 1% of the more than 4,500 Hospices in the USA meet this mark.

The result? Above a quarter of dialysis patients Received hospice care compared to about half of the general Medicare population. And their average length of stay in hospice care is around five days, compared to more than 17 days for the general population. This means that dialysis patients are often treated aggressively medically until the end of their life and forego the convenience of targeted end-of-life care.

“What has happened over the years is if a dialysis patient is ready to drop out of treatment, then they come to the hospice,” said Dr. Keith Lagnese, Chief Medical Officer of the Family Hospice at the University of Pittsburgh Medical Center. “You are forced to draw this line in the sand. Like many things in life, it is not easy. “

Lagnese said the Seattle program was one of the first in the US to address palliative and hospice care for dialysis patients. Its UPMC program, which has experimented with concurrent care, allows patients up to 10 dialysis treatments after they are admitted to hospice care.

In the Washington State program, there is no limit to the number of sessions a patient can receive. This makes it easier for the patient to get started with the new arrangement instead of abruptly interrupting the treatment that he has often received for years.

“If you have to stop immediately, it feels like you’re falling off a cliff,” says Lam, the program’s founder.

In McGee’s case, she used palliative care for three years to deal with the daily struggles associated with dialysis. Care focuses on relieving physical side effects and emotional symptoms such as depression and anxiety. It also addresses spiritual needs, which McGee says have helped increase the comfort she finds as a member of the Baha’i religious faith.

“They provide mental support and advise you on what you need to do to get things right, and they are your liaison,” said McGee. “Basically, I just lived before without knowing the information.”

Given her worsening medical condition and the possibility that it might become too difficult or even impossible to keep dialysis long-term, she said she welcomed the option to move into the last phase of her life.

“I am scared? At some point I did, ”said McGee. “But they assure me that my rights will be upheld, they will be lawyers for me when it happens. With this support I have time to live. “

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