Aging in southeast Iowa: ‘Death should not be a dirty word’

For most, the beginning of life is planned meticulously but as it carries on, planning for the end of life is forgotten.

Hospice agencies across the state take on patients in multiple counties to help create an end of life that is just as special as the beginning.

Katrina Altenhofen, Executive Director of Hospice of Washington County, said to be placed on hospice, a referral must be made by and can be done by the patient themselves, a family member or medical personnel.

'In order for them to meet the hospice Medicare benefit, a doctor has to say, ‘you're in your last six months of life,'” she said.

Altenhofen said she feels the system is backward in that way and feels palliative care, specialized care for people with serious illness, should be the first step because it is impossible to predict if someone has exactly six months yet to live.

'Having that palliative care still allows them to seek aggressive, curative care if they wish, but it allows us to come in and provide some more of that comfort and compassionate care,” she said.

However, Altenhofen said this is not an option because there is no funding for a Medicare benefit. Multiple hospice organizations at the state and national level are trying to reverse that, she said.

In the meantime, patients are referred by a doctor and admitted by a hospice medical director, she said. The doctor's diagnoses and the medical director's must match in order for the patient to begin receiving care. The diagnoses must also fit the criteria set out by Medicare.

'Just because I'm 102 and might have a little dementia does not make me hospice appropriate to be able to be admitted,” she said, using a theoretical situation to explain.

Ginny Zmolek, Director of Clinical Services for Hospice Compassus, said hospice can be done at home, in a hospital or nursing home. The location generally depends on the level of care needed.

In an instance where a patient is in an acute crisis, meaning there are symptoms that cannot be controlled at home such as constant medication through an IV, receiving care in a facility is recommended.

'We still guide the care in the hospital and we're seeing the patients as well,” she said.

Hospice Compassus has four locations throughout the state including one in Washington. Ten nurses are employed out of that office, she said, and travel all throughout southeast Iowa with the exception of Des Moines County.

To provide services in a county, the company has to apply to the state and receive permission. They have recently acquired Lee, Van Buren, Davis and Wapello counties, she said.

When nurses are done working their 8 a.m. until 5 p.m. shift, two night nurses are on call from 5 p.m. until 8 a.m. Families, or even patients, are encouraged to call them at any time and will travel to where the patient is.

'Their philosophy is ‘I'm on my way,'” she said.

A for-profit company, Zmolek said Medicare pays for 80-90 percent of hospice care throughout the country.

Hospice of Washington County provides all of its services for free, Altenhofen said. The funding comes from Medicare reimbursements and fundraisers. This can come into play for community members who do not believe in insurance for religious reasons, such as Amish or Old Order Mennonite. Their costs are covered through this community service.

'It becomes a juggling act to make sure by the end of the day we still have enough (money) in there to be able to support and do what we want to do,” she said.

The admission process itself is twofold, she said. A social worker will do paperwork and discuss benefits and a nurse will do an assessment. Both steps must be done before the patience can be admitted.

Altenhofen said one common problem with hospice is caretakers not understanding every step of the process because they are distracted by the current situation. She compared it to bringing a baby home from a hospital, saying parents think they know everything they need to but at the first sign of something being wrong, panic.

'It's no different at end of life. You've just been given the worst news of your life that your ticket is going to be punched in six months. So yes you're receptive to things, but a lot doesn't get absorbed,” she said.

Every hospice patience is required by law to have a caretaker, she said. The organization cannot provide one themselves but do provide personnel who check in on the patients regularly.

The general rule for hospice care is that the patient must be checked on every 14 days, a rule Altenhofen defined as 'ludicrous.”

'How compassionate is, ‘Hey I know you're dying but I don't have to come back for another two weeks?' Our rule for our hospice is we usually see patients once to twice a week and depending on all that we want from our services, there's a good chance you're going to have someone from Hospice of Washington County there everyday if you want to,” she said.

Hospice of Washington County serves seven surrounding counties, including Jefferson and Henry. Because of all the options, Altenhofen urges people to research the options available and see which one works best for them. Although it can be a uncomfortable topic, she said planning for end of life is just as important as planning for the beginning.

'We came into the world in a such a glorious fashion and so much was made about it. Why can't our end of life be the same way?” she said. 'Death should not be a dirty word.”

The focus is not on death, she said, but instead on enjoying the last of life. Altenhofen said the organization can help patients take trips and vacations if they are able.

'Just because you go on hospice doesn't mean you're going to die within 24 hours or have to go home and live on a hospital bed,” she said.

Zmolek said she feels people do not plan enough for hospice care.

'Hospice is a benefit where somebody can come on service or qualify for when their disease prognoses is showing they have six months or less to live. A lot of times people are coming on when they're acutely ill and there's no coming back from it, so coming on services earlier rather than later allows the team to know the patient and know what they want at end of life rather than coming in when they are no longer able to make decisions and state what their wants are,” she said.

Patients can stay on hospice longer than six months if needed, she said. Speaking in theoretical terms, she said if a patient were to go on hospice Jan. 1 and their six months was up June 30, they could reapply for another six months. A doctor would need to visit the patient to determine their health still is declining and hospice care still is recommended.

The transition is not automatic, she said, but the hospice team will take care of the paperwork to make the processes as smooth as possible.

In addition to patient services, hospice organizations provide a variety of services for families as well. Volunteers provide social services like playing cards or reading books and stay with the patient to allow the caretaker time for themselves to run errands, Altenhofen said.

Respite care is available as well, she said, which allows the patient to stay in a hospital or nursing home for up to five days. This can result from exhaustion of the caretaker who needs a break or if they need to travel. This is available multiple times throughout the hospice stay.

Personally, Altenhofen has an Emergency Medical Service (EMS) background. When responding to serious calls such as car crashes, there is no such thing as end of life care if the patient dies immediately. Planning for end of life and getting to have the control to choose how they would like that to look is important, she said.

'I have the honor to be able to have them do the end of life that they want,” she said. 'You chose what you wanted to wear today. You chose what jacket you were going to put on, your pants, your shoes, everything. Why can't you choose how you want your life to be as you progress to the end?”