Like the saying goes, ‘there is nothing more certain than death and taxes.’ But, despite the certainty, at least of death, few of us are willing to face the ‘issue’ or talk about ‘it.’
But Eileen Scott -- friends call her Scotty -- has faced the prospect for 27 years and freely discusses the “end stages” and how to make those folks the most comfortable. Eileen will retire soon from Northern Arizona Hospice, the hospice care available through Northern Arizona Healthcare. She has daily learned to approach those who are facing the last days and has a number of lessons to share with the rest of us.
It’s good timing. This is National Hospice Month, a time to honor those in the last of their lives and salute those who care for them.
“What I try to help people understand is this is still a human being. They still have feelings and need care,” she says. “The type of care is a little bit different, but they still need to affirm their importance, affirm their life -meaning that they made a difference in this world. I keep trying to tell people, ‘they are not dead yet.’ So, let’s just take care of them and talk to them like I am approaching you and you are approaching me. They still have value.”
Eileen will tell you that facing the end is not for every individual or family. It can be a struggle.
“Not every family chooses hospice. There are some families that have to fight to the very last breath and they will continue to seek treatment as long as the doctors are offering it. There is usually some kind of trial, care and studies. And so people will always continue to try to have something done.
“There are others who know that the fight is wearing them out and they are tired and don’t want to do any more, not go to the doctors and have treatments that are making them feel ill,” she says. “So the focus of care changes from one of curing them, to keeping them comfortable.”
What is hospice and how is it different? It is really the type of care and comfort that is only available at home, around friends and family. It has been with us for thousands of years but it got a boost into the mainstream through Medicare.
“Back in 1983 Medicare started pilot programs to offer more cost-effective and appropriate care to people who are in the end stages of their lives rather than putting them in the hospital and offering them the opportunity to stay home. That is the focus of hospice because there is no place like home,” Eileen says.
“Hospitals are considered acute care settings, so when a person has an illness from which they aren’t going to get better, going to the hospital isn’t necessarily the best place for them, because the hospital will do X-Rays and tests and IVs and treatment. So the Medicare benefit was started to make sure that people were getting the appropriate care without having to necessarily go through all of the tests. They set up some guidelines that said that the person that is admitted to hospice and is choosing hospice, has to have a life-limiting illness and the can’t be seeking any curative treatment.”
They are not seeking chemotherapy or radiation, blood transfusions. The care is just basic, compassionate, appropriate care for what they are experiencing, because the treatments aren’t working anymore. So the people have chosen, and the doctors have chosen to tell the person that that ‘the treatment isn’t working, but I want you to have the best care possible.’
Eileen says that hospice can seems like something of a contradiction. “Trying to focus on their wellness, that is something of a contradiction when somebody is in the end stages of their lives. But they can still feel well and have their symptoms controlled. And they can still try to make every day count, so we focus on trying to make them as independent as they can be, because their bodies are tired and so they can’t always be as independent as they would like to be. But they have the opportunity to decide what they want to do and what they want to save for later.”
Eileen fell into hospice care naturally. She has been a registered nurse since 1967.
“During the course of my career I always seemed to be able to take care of that person, that patient that was dying or in the end stages of their life. Most people try to avoid caring for those patients; they are not comfortable with them. I always seem to be comfortable and didn’t mind taking care of them.”
But, she always had a nagging question, when hospitalization was the accepted norm.
“When I was in the hospital, often I would wonder about the family that was gathered around the bed, getting lunch from McDonald’s and doing their vigil. ‘Wouldn’t it make a difference if they were able to do that at home where they were comfortable?’ That way they would be surrounded by familiar pictures and smells and their own pillows. For me that always seemed to be a natural place for that to happen. So when we stated our hospice, I was offered the position. I have been doing it ever since and enjoying it.”
Hospice started in 1984 in Cottonwood. Alexandra Hepburn approached Rita Poindexter, the head nurse at the time when the hospital was still Marcus Lawrence. Ann Ahearn was the head of Homecare. They collaborated to start the program. “We are the first community hospice for this area and the only nonprofit hospice in the Verde Valley.”
Scott says many of the first patients of hospice suffered from cancer, because the signs become very clear with cancer and a doctor feels more comfortable with their prognosis of six months or less.
“But, now, we are seeing a lot of other illness and other disease processes. We see people with cardiac conditions, Alzheimer’s, lung conditions, end-stage renal failure, adult failure-to-thrive, debility, those who have a lot of illnesses, none of which would cause them to deteriorate, but with the combination together, they call them co-morbidities. When they have a lot of those, the doctor can see they are declining and that is when the doctor will refer them to us.”
While the hospital initiated the compassionate home care, every year the hospice field has expanded with more facilities in Cottonwood and elsewhere.
There is now an organization, the National Hospice and Palliative Care Organization at www.NHPCO.org. Eileen says they have a lot of good statistics on hospice care.
“The Medicare guideline is that they must have a six month or less prognosis. And the doctors have to verify that. We haven’t had many, but we have also had children as well.”
She admits that children in those conditions tend to be taken to the Phoenix valley where there are many more specialists.
“There are times that the doctor feels that person is appropriate to be placed in hospice and then they live a little longer than that, than six months. As long as their condition is still poor, we take care of them. But we have had patients that actually get better on hospice.
“So people can get off of hospice if they improve and then get back on at a later date. Things can change that way. But they really have to have a limited prognosis. When they get off, they are discharged.”
It’s a team effort
“All our nurses are trained nurses in hospice and palliative care,” Scott says. “We have social workers that deal with some of the emotional issues, as well as community resources to help families manage the care within the home.”
“The nurses work on symptom management: pain control, if they are not sleeping well, and other symptoms that might be making them uncomfortable. And they teach the families how to manage the care at home, too.”
And, yes, there is a lot of interaction with family members.
“Without the family being there to take care of the person, it is not safe for the person to be there alone after a certain point of time. So we usually have some family member or friend to be there that has agreed to take care of the person until their end.”
The Northern Arizona Hospice program has about 10 employees, more registered nurses than social workers, but there are also aides and volunteers, including chaplains. The volunteers do things that good friends would do for the patient like running errands for the patient, or just giving the family a break and helping with some light house keeping.
“The volunteers have to go through 30 hours of training before they are allowed to help out our families,” Scott says. “Everyone works together as a team. If I as a nurse go in to a family and I am not sure which way to go, I have a social worker to help me. If the social worker is out there and the family member is having some physical problems, she always has a nurse to call. And the aides, when they are bathing a person, interact differently with that person. They may see things that the nurse and the social worker need to know. Same thing with the volunteer. When they are out there, every team member is critical and important.
“There are times we have patients that can be left alone for short periods of time, and we do have family members that work. There are also people that live alone without families, but there are neighbors and church members. There is a plan started before they need it, so when they don’t have and can’t safely stay at home, there is always a plan to put something in place, so the person always has the care they need.”
They are on call 24-hours each day. And there are usually about 20 to 30 patients.
Every family is different, according to their needs and those of the patient. Some family members discuss the end, but others don’t
“We respect them and meet them where they need to be,” Scott says. “We help them look at the importance of making amends, perhaps making some final arrangements and legal paperwork. Some people just found out today and two weeks from now, the disease will have progressed so far they are gone, so they may not have so much time. Some people have more time. Others realize the importance of having things in order. Some people come to us and everything is pre-planned and in order and they are comfortable with that.
“Other people are never comfortable talking about death. Our being there is not going to make them any more comfortable. Some will allow us to bring them forward and talk about it and others will not. We just have to be where they are at.”