What You Need To Know Before You Use Hospice

 

Earlier this year a Dallas couple who run a private for-profit hospice-care business were indicted along with 14 others, including some doctors and nurses, in a $60 million Medicare fraud scheme that put financial interests over the needs of patients, according to the U.S. attorney’s office for the Northern District of Texas.

Every time this type of story makes headlines, it sends chills down the spines of many.

If, in your old age, you can’t turn to health-care providers for proper medical assistance and guidance, who can you trust when you need outside help?

Dr. Bob Uslander, the founder of Integrated MD Care, based in San Diego, California, says it’s a serious problem that the medical industry has been painfully slow in recognizing and addressing.

“There’s so much fear of the unknown for most people. On top of that fear, patients and families often feel abandoned when they need good care the most. They don’t have the tools at their disposal to know what they need when things get challenging with their health.” says Dr. Uslander.

In the case of the Dallas Hospice business, Novus Health Services, the indictment includes charges of Medicare being charged for care that was never delivered, as well as patients dying due to overdoses while in their hospice care.

According to a report in the Dallas News, prosecutors claim that nurses gave high doses of drugs such as morphine, regardless of whether patients needed it, to justify higher payments,”

“Really, it can be a crapshoot,” says Dr. Uslander.

Patients can get lucky and everything may go just fine on hospice care, but clearly, that’s not always the case.

“I think the only way to protect yourself and your loved ones is to have some kind of an advocate guiding you, someone who’s familiar with the ways of the medical world, who can help you judge what is or isn’t in your or your loved one’s best interest.”

In response to this need for better medical care and advocacy for patients and families, Dr. Uslander started a one-of-a-kind program. His private agency offers patients and families facing complex and terminal illnesses in-home medical care, advocacy, and alternative therapy support. Integrated MD Care goes beyond the support patients typically receive from a hospice or palliative care program.

In some instances, his team works alongside a hospice agency. Being a medical doctor with more than 25 years of experience in emergency medicine and palliative care, Dr. Uslander knows the inside scoop on a number of hospice programs.

“I think that there are a lot of great people working in hospice–a lot of people with big hearts and lots of experience, but many are working in organizations that focus more on numbers than people. Hospice agencies often hire inexperienced nurses, sometimes right out of school, who may be good nurses, but are unskilled at caring for the dying. And they’re often given little support and guidance while caring for their patients,” explains Dr. Uslander.

The problem is intensified because of the hospice system, while flawed, is also the program that most medical professionals recommend to their patients.

“If somebody is already on hospice, I become an extra layer of support, overseeing, ensuring that that hospice is doing everything possible to provide great care to my patients and families.” explains Dr. Uslander.

“If the care that they’re receiving from that hospice is appropriate, that’s great. If it’s not, and we can’t remedy that through a couple of conversations, then I find another hospice agency. One that I know is going to give them the care that they need and deserve.”

If you or your loved ones are in need of at-home care, here’s what you need to know before using hospice.

1.Hospice care aims to keep a patient comfortable at home;it is not about seeking aggressive treatments for the patient. Dr. Uslander says this is an important point to understand because some patients get on hospice and still want to pursue treatment but that’s not an option they’ll be offered while on hospice.

“We have patients that need extra support, so they choose hospice, then they discover that they can’t get blood transfusions, or physical therapy, or radiation or chemotherapy.  They didn’t understand they had to give those things up.”

2.You will no longer have your regular doctors, except for rare occasions.“When people get placed on hospice, the relationships with doctors they’ve had for years comes to an end, for the most part,” says Dr. Uslander.

He explains that this is a time of life when patients and families are often the most afraid and the most confused; this is when they need the most guidance and support from people they trust.

“But the physicians who have been on their team up to that point usually disappear. It’s not that they wouldn’t want to help, but they usually don’t have time, and usually, don’t know end-of-life care.”

“The only physician support most of the time is a hospice medical director who has a busy private practice and is only available for phone consultations when on call. This person knows virtually nothing about the patient and doesn’t have time to engage.  Not with the patient, and not with the family.”

Hospice programs hire nurses, and sometimes nurse practitioners, to make visits to the patient’s home.  Very little care is provided by doctors.

3.No nutritional guidance and no physical therapy. While hospice isn’t exactly a death sentence, it’s definitely not typically promoting wellness. Patients on hospice care do not receive nutritional guidance or physical therapy. Alternative types of care (music programs, massage, acupuncture, yoga) that have been proven to aid patients in the final stages of life are seldom included in hospice care, though music therapy has been gaining some ground.

“When somebody is enrolled in hospice, they rarely get any guidance or support with diet and nutrition. It’s as if when you’re on hospice, you have a terminal diagnosis, so you better figure it out on your own. There is no nutritional guidance, counseling, or physical therapy support,” says Dr. Uslander.

4.Your medications may no longer be accessible unless paid for privately.This is often a big surprise to both new hospice patients and their loved ones.  People often learn that once on hospice some of the medications they’d been receiving will not be covered by hospice, but also not covered by their insurance anymore.

Dr. Uslander explains, “Hospice will usually not authorize any kind of IV therapies. They try as much as possible to use oral medications, which are sometimes effective and appropriate, but there are times when some fluids or intravenous or subcutaneous pain medication would be much more appropriate and really help the patient’s quality of life.”

This often becomes a battle that patients and their loved ones have to fight. Without a professional advocate, these battles are not often won. Dr. Uslander says it’s a difficult battle. “Many hospice companies, most of the time, will resist that.”

The reason, ultimately, is money.

The equipment and medication for IV administration are more expensive and intensive and require more staffing from the hospice agency.

5.Hospice does not necessarily provide support at the time of death. This is something you need to give considerable thought to determine how much support you’ll need.

For many, death is a scary and very sad time. If you think hospice will be there for you during those final hours, think again.

“The nurses are not necessarily going to be scheduled or be on-site when a loved one is approaching the very final moments of life,” says Dr. Uslander.

The only time that hospice will do that is if there are symptoms that aren’t being adequately managed and they need somebody there to administer medications more frequently.

Dr. Uslander says he doesn’t think that’s inappropriate. He points out that hospice is really designed to help prepare families and support families in creating an environment of comfort and safety.  “We should be comfortable helping our loved ones in those final moments.  But we need help getting prepared and knowing how to help.”

The big caveat, Dr. Uslander has found, is that often patients and their loved ones don’t feel comfortable managing the medication or even being alone without a doctor or nurse present when the patient is passing.

This is when many people will feel let down by hospice; you need to know this is just not part of the typical care that’s provided.

Some hospitals and health care systems are starting to offer palliative or transitional care programs for patients who leave the hospital with a serious or terminal illness but are not appropriate for, or ready for, hospice care.

But Dr. Uslander says they’re still not going far enough with the help and thus a gap in care remains during a critical time of need.

That’s where he believes that his model of care comes in. Agencies like Dr. Uslander’s offer medical care, support, and advocacy for a monthly fee that is customized for each patient, though ranges anywhere from $1,500 to $6,000 per month.  Some patients are only under his care for their last month or two of life, while others will receive care for years.

“The areas where we really bring so much value are being a bridge, or a welcome alternative, for people who need extra support but aren’t ready for hospice.  Sometimes these are people who don’t want to give up on the possibility of additional treatment or therapies. Sometimes they are people who only want to be made comfortable but don’t want to venture into that hospice world. They want to be at home, but they may also want treatments and support available that can maximize their quality of life. This requires having someone knowledgeable coordinating their care.  This is where we really shine and make a profound impact on people’s lives.”

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