A big misunderstanding of hospice care is that it is comfort care for the final days of life.

That’s not true, said Jodi Wagner, inpatient manager for the Justin T. Rogers Hospice Care Center with Cleveland Clinic and this month’s Healthy Actions column expert.

The center provides both hospice services at its facility on Ridgewood Road in Copley and in-home care through the former Visiting Nurse Service.

Q: Can you explain?

A: People think hospice is a place where we ask people to go and die. Hospice care is to truly improve the quality of life for someone with a terminal illness for them to live until they’re no longer living.

Q: How does one qualify?

A: Medicare made the original definition, that two doctors [one being a hospice physician] agree that a person with a terminal illness, if that disease continues on that course, that person has six months or less of life expectancy.

But we don't set our watch and calendar for that six-month date. As long as a person continues to meet criteria for the disease for which they’re deemed terminal, they can stay on hospice.

According to national statistics, more than 50 percent of people [who] are under hospice [are there] for less than 30 days. They’re entitled to six months, and it's inexhaustible and renewable.

Q: I've heard of people improving and coming off hospice?

A: Yes, if someone improves, they can go off hospice to continue the curative treatment. Sometimes they want to try rehabilitation. Then they can come back on hospice for the same disease should they fail curative treatment or decide "enough is enough" — or for another disease that is making them terminal.

Most people don’t pigeonhole into one disease. Most patients have multiple diseases, like chronic diseases or acute diseases, that affect their lives.

In hospice care, there is one making them terminal.

Q: Are there some diseases that will not allow for a patient to go on hospice care and continue their life-sustaining or potentially life-saving treatments? For instance, can a cancer patient undergoing chemo or a dialysis patient get hospice services?

A: For cancer and chemo, I can’t say I’ve ever seen it in 23 years. For someone to qualify for hospice that has a cancer diagnosis, it’s usually widespread and it's spread or because of age they don’t want to pursue chemo.

It is rare for a dialysis patient to be able to do hospice. I have had two patients who were on dialysis and they were deemed terminal for another disease, and they chose to stay on dialysis while getting hospice care for the other disease.

Q: What happens under hospice care?

A: It’s an interdisciplinary team approach to care, which includes a hospice physician, attending/specialist [or primary care doctor], nurses, social workers, aides, medications, equipment, chaplains, volunteers and bereavement.

A patient is moving to comfort and symptom management for terminal disease. That doesn’t mean we stop all medications. If there are other medications the patient may be on for other diseases and if we stopped those, it would be uncovering a myriad of symptoms.

Q: Then what happens?

A: In home hospice care, a nurse can visit one to five times a week. Social workers can also help connect them to services.

Home hospice is not 24/7 nursing care, but there is a triage number to call. Hospice’s goal is to keep the patient at home and out of the emergency rooms and hospitals. Many families will pay out-of-pocket for separate home-health care.

Q: What about medical equipment?

A: Without hospice, patients pay for home medical equipment. Under hospice care, it is assumed the patient will debilitate over time so equipment is 100 percent provided. That could be hospital beds, wheelchairs, bedside commodes and shower seats and even oxygen as a comfort measure.

Q: Can you explain the hospice facility?

A: Hospice’s preferred method is in a person’s home or nursing home. Less than 10 percent of 1.2 million to 1.5 million hospice patients nationally are in a facility.

There are three levels:

• General inpatient: Short-term medical treatment instead of going to the ER or hospital. We treat based on the terminal disease and symptom.

• Respite care: For caregivers of a patient in their home. Most qualify for a respite benefit of five days and five nights [consecutive] for a family to get a break as a caregiver for the patient to go to a facility.That can be once a benefit period or every 90 days. There can be circumstances if the caregiver gets ill, where they can qualify for respite care. After 180 days, patients are brought under more scrutiny and every 60 days they need to be re-evaluated.

• Residential hospice: A family or patient can choose to pay out-of-pocket for 30 days at the facility.

Q: What else is important?

A: It’s truly that misconception that in order to come to hospice you have to plan on dying. It’s really not about that. Families will also ask “How long do you think my loved one has?” I can’t tell you. Your loved one is going to write this final chapter. Our goal as a hospice team is to walk along beside you. It may be a difficult chapter, or it may be a nice, easy-flowing chapter. We’re going to go and support and walk with you along this journey. I’ve never seen two people die the same way.

 

Beacon Journal consumer columnist and medical reporter Betty Lin-Fisher can be reached at 330-996-3724 or blinfisher@thebeaconjournal.com. Follow her @blinfisherABJ on Twitter or www.facebook.com/BettyLinFisherABJ and see all her stories at www.ohio.com/topics/linfisher