In hospice care in Topeka, patient and family support paramount

Karren Weichert, president and CEO of Midland Care, has worked for decades to provide hospice services in the Topeka area. (Regina Stephenson/Special to The Capital-Journal)

The Topeka Capital-Journal recently talked with Karren Weichert, president and CEO of Midland Care in Topeka, about the hospice care industry. Excerpts from the discussion with Weichert, a professional in the field since 1990, follow.

 

Q: What is hospice, and how does one qualify for hospice services?

Weichert: Hospice is something people reach for when they are no longer seeking a cure for their disease. It’s usually paid for and qualified through the federal Medicare services.

It may be something a doctor refers a patient to, or they may call themselves. Either way, we’re required to have a doctor’s order. A physician must be willing to say, “If the disease progresses as expected, this patient’s life expectancy is 6 months.” Now, that doesn’t mean the patient has to actually die in 6 months. Medicaid just requires a physician to sign orders again after 90 days, then again after another 90 days, and then every 60 days for an indefinite period after that.

For instance, my father lived for 18 months in hospice. Was he still qualified for hospice? Yes. The doctors underestimated his will to live, but they still had the general expectation that, if the disease progressed as they expected, he had only six months to live.

Q. Why would someone choose hospice over other forms of care?

Weichert: Studies have shown people who elect to begin hospice services earlier on live longer than others with similar diseases. I think the reason is the support we provide. Patients get to focus on who they are, and focus on living their lives instead of focusing on their disease. It’s a different kind of hope. One hundred percent of us die. None of us likes to think about it, but it’s a certainty. Yet, if we can do some things and put certain supports in place, sometimes people outlive their diagnoses by quite a bit.

Q: A common understanding of hospice seems to revolve around the idea that it’s just about relieving pain, keeping people comfortable until they die. Would you agree?

Weichert: Hospice is still about keeping people comfortable and listening to what they want. Some people think … keeping someone comfortable means we don’t do very much. But sometimes keeping people comfortable takes a lot of knowledge, of course, medication, listening to what’s going on, understanding their suffering. Often, it’s not about their physical self.

People become more isolated with prolonged illness, because there’s a lot of loss — loss of friends, loss of mobility, loss of a life they envisioned, loss of their faith. A lot of what we do in hospice addresses the social, emotional and spiritual losses, as well as physical losses a patient experiences. “Keeping them comfortable” seems simple, but it actually takes a comprehensive team.

Q: What is one of the challenges facing hospice care?

Weichert: In 1990, when I started in hospice, the average stay was about 80 days. Now, it’s at about 40 days. People spend less time in hospice because they delay starting care. They see hospice as giving up.

Now, when people get a diagnosis of something terminal, the first thing they do is get on the internet, Google it and find numerous treatments — some experimental — to try. Sometimes this access to information is good; you can take things to your doctor that maybe they hadn’t thought of. But, most of the time, I find it gives people with terminal illness a false sense of hope. They put off calling hospice, because there are so many more treatments that there weren’t 40 years ago, and people want to believe an aggressive treatment will extend their life.

I’m a two-time cancer survivor. I know how important it is to hope, to research, to survive. But I think sometimes we do it to the detriment of our quality of life.

Q: Based on what I’ve read, it looks like you’ve expanded services, even as length of usage has decreased?

Weichert: We’ve embraced the community need. We change our services as our society and its needs change. We started adult day care in 1992 for patients who had long hospice stays. The day center was a way for them to engage with others and not be isolated. People started calling to say, “Mom has Alzheimer’s. Dad had a stroke. They aren’t in need of hospice, but could we use your adult day care?” We said sure. It wasn’t a change we anticipated, but our program has responded to the needs of our society.

Through (University of Kansas) St. Francis (Campus), we provide palliative care, which means helping people stay comfortable and focused on quality of life, even as they treat their disease. Our hospice house started in 2000. It’s a Medicare-certified inpatient care facility for when care becomes too much for the patient to remain at home.

We started our PACE program (Program of All-Inclusive Care for the Elderly), which is palliative care for individuals who may not have a terminal illness but have a combination of things, such as having progressive heart failure, dementia and diabetes. No one condition is terminal, but combined the diseases make their day-to-day living much more difficult. We also have several programs to help families on the other side of the process, helping them with grief after the loss of a loved one.

We’ve taken the DNA of hospice — those physical, emotional, social, spiritual aspects — and applied it to everything we do.

Q: What does a hospice experience look like for a typical family?

Weichert: A family will work with a whole team for support. Each team has a nurse, a social worker, chaplain, home health aide and volunteers. The nurses will assess the patient and their home and teach the patient and family about what to expect and how to care for their loved one. The social worker helps the patient get plugged into resources like Meals on Wheels, can help communicate with insurance and can help the patient and their family emotionally through this process.

The chaplains walk with people where they are, helping the patient reconcile with whatever their belief system is, so they can die free from guilt, comfortable and at peace. The home health aides deliver actual in-home care, things like help with bathing and toileting, or even light housekeeping.

The volunteers are there just to befriend the patient and family through this time, maybe by talking or reading, or just sitting and holding the patient’s hand.

We also help both during an illness and after with opportunities for the family to grieve and hopefully come to a place of peace.

Q: What does the cost of hospice look like?

Weichert: Midland Care is a not-for-profit, so while much of our funding comes through Medicare claims, we try to fundraise the rest. The majority of patients are over 65, but even for those younger — and we unfortunately do have young patients every year — most commercial insurance has a hospice benefit of some type. I think sometimes people think they can’t afford this, when, in fact, most of our patients likely won’t have to pay for much of anything.

Q: With all the changes to health care, as well as the current climate of uncertainty, has hospice care been affected?

Weichert: Yes. The 2 percent sequestration that took effect in 2013 affects us in a big way. For hospice, Medicare is about 80 to 90 percent of the revenue.

Frankly, we’re very concerned about the new tax law. There’s the concern that we’ll see another sequestration, which could be devastating for our services. Medications keep going up, costs for medical services keep going up, supplies keep going up, and we’ve got to pay for all of that.

Q: What do you think is important for people to know about end-of-life care?

Weichert: Your family should have conversations about what you want the end of your life to look like. You have to have those discussions with your family whether you’re 81 or 21. Having an accident or a trauma, family members have to make decisions in this traumatic environment, and families argue and just tear apart. There are a lot of resources available, though, if you just reach out and ask for help.

Regina Stephenson is a freelance writer who lives in Tecumseh. She can be reached at regina.marie.stephenson@gmail.com.

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HOSPICE FACTS

  • More than 1.38 million Medicare beneficiaries were enrolled in hospice care for at least one day in 2015.
  • Close to half of Medicare beneficiaries’ deaths during that year occurred in a home and almost a third of the deaths were in nursing facilities.
  • Medicare paid hospice providers $15.9 billion for care provided in 2015.
  • The average length of service for Medicare patients enrolled in hospice in 2015 was 69.5 days.
  • The median length of service for Medicare patients enrolled in hospice in 2015 was 23 days.

Source: National Hospice and Palliative Care Organization

RELATED LINKS

Read more about the Capital-Journal special section, State of Health Care in Kansas, at http://cjonline.com/state-health-care-kansas.

See the 24-page Capital-Journal digital magazine of the special section here.

 

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