ATLANTA — It’s hard to talk about dying, but it’s one of life’s inevitable moments.
Hospice care is about dignity, pain management and helping people with chronic or terminal illnesses live their remaining days more fully. It’s a service for both the person transitioning and their family members, but there are still a lot of misconceptions about this kind of treatment.
11Alive's Christie Diez spoke to Aging and Dementia Transitions Coach Robin Andrews Smith and Capstone Hospice COO Eric Williams to dispel 11 myths of hospice care.
MYTH #1: Hospice is giving up
Eric Williams, Capstone Hospice: It’s not giving up. It’s just changing from strictly being focused on cure to let’s focus on quality. How do we make you comfortable so that you can enjoy the time that you have remaining? If a patient’s having a symptom of some kind that’s causing them to be uncomfortable, we’re going to treat that. So, it’s not completely passive.
Robin Andrews Smith, Transitions Coach: There is a stigma that we're going to be giving up on someone or letting go of our classic medical treatment and care. And that is just not true. As a matter of fact, with hospice often people will report after the experience of feeling like they had better medical care.
MYTH #2: Hospice care speeds up death.
Eric Williams, Capstone Hospice: One of the greatest myths is somehow it expedites someone's passing. In reality, it doesn't. I mean, it really supports the patient from a holistic standpoint. At this stage in someone's illness, a lot of times it's all focused on the physical aspect, the disease progression, and we forget the person in context.
PHPCO, the National Hospice and Palliative Care Organization, actually did a study. It was published in 2007 where they found with certain disease processes that a patient on hospice actually lived 29 days longer than without hospice.
Robin Andrews Smith, Transitions Coach: It's quite an interesting and ironic thing how often people will live longer because of these supports. They are gentle supports. They are about helping people relax. They are about getting people out of pain and they are about supporting the family unit so that we can be more comfortable and heal the heart spaces and the fears.
I've seen people on hospice care anywhere from upwards of two years all the way into just a couple of days or a couple of weeks.
MYTH #3: You must leave your home for hospice care
Eric Williams, Capstone Hospice: No one has ever stopped to ask them, tell me about what you want. Where do you see this going? How do you want this to happen? [Many people say] I want to be in a familiar setting that's home to me, around people that love me and that know me and, you know, through hospice, because of the way we approach it, we're able to facilitate that for them.
Sometimes they need medical equipment that will help them stay in the home longer. We can provide that. We provide medications and medical supplies and various things to help support them in the home. That just adds to them being able to enjoy life and to balance it and be together versus everything focused on just the disease itself
Robin Andrews Smith, Transitions Coach: A lot of people will want to die at home. They don't want to be in a hospital or a nursing home. And hospice is an amazing support for in-home care.
MYTH #4: Once you go on hospice, you can’t go off
Eric Williams, Capstone Hospice: People, as we say, can graduate from hospice. Sometimes they come on and it looks like we're looking at a terminal illness and then things change. The underlying disease process improves and they come off of hospice. We've had that happen several times where, you know, certainly if that makes sense and there's an opportunity, then we encourage that and certainly educate them on that.
Ultimately, we do have patients that will come on and they decide I want to pursue aggressive treatment. I want to go for a cure. They may come off of hospice at that point because they want to pursue more aggressive treatment. Other times, they've been pursuing aggressive treatment and they're like, you know, I'm sick all the time. I'm not feeling well. I'm not enjoying life. And ultimately, the doctor, if they're honest, will say, well, we're not going to change the ultimate outcome, but now let's focus on the quality.
Robin Andrews Smith, Transitions Coach: Oftentimes our medical conditions kind of hit this crossroads where we're not really sure if someone is going to keep improving or if the condition is going to get worse. If you choose hospice, because the comfort care seems to be the better path and someone improves, you can always step away from hospice and go back to your primary care. Your primary care is when you're going to be treating the original diagnosis, the original illness such as a cancer or a dementia or a Parkinson's. The hospice and palliative and comfort care models actually treat all the secondary problems that come from the original illness.
MYTH #5: Hospice is not medical care
Eric Williams, Capstone Hospice: I think some people think of hospice as you hold their hand and, you know, just speak words of encouragement, but it's an engaged medical model where we are looking at symptoms, where we're looking at the best way to control those so that they can be as accountable and as engaged in life as they possibly can for as long as they have left.
I think the medical community at large is starting to see the value in that, that you really don't just treat the disease process. You look at the person and find out about who they are, what is it that they really want? Clarify with them, you know, what do I want this to look like? A lot of times it's not going to change the ultimate outcome, but it certainly can change their experience and the quality that they have in those days that they have left.
Robin Andrews Smith, Transitions Coach: People choose hospice care because there comes a moment where treating the condition is really no longer going to serve someone. It's a more rounded health care where you're kind of intersecting both the medical model and the behavioral healthcare model. Typically, what happens is you get the diagnosis for whatever the chronic condition is, a cancer or a dementia, for example. Within the medical model, we still treat all of the things that go along with that illness. So let's say someone with cancer has a bed sore or someone with dementia has a urinary tract infection. We still treat all of that under hospice care, but we are not treating the chronic condition.
I always encourage a family to check in with their doctor if you have a chronic condition or a neurodegenerative illness.
MYTH #6: Hospice is only for the person dying
Eric Williams, Capstone Hospice: We're able to bring comfort not only from a physical standpoint, but from a psychological standpoint, a spiritual standpoint to the patient and the family. We find when we can do that, that it actually brings peace.
Sometimes it's a nuclear family like traditionally we think of and other times it's friends that have become family members. To them, it's their support system. And, you know, terminal illness affects not just the patient, but all those that love them.
We have done some amazing work to help support that patient family, to help them close their life out in the way that's the most meaningful to them. And then we will follow their loved ones up to 13 months afterward through our bereavement program.
Robin Andrews Smith, Transitions Coach: What I love about hospice care is it really does tend to the person and the whole family unit, because when someone is really facing that transition, it's impacting everyone.
They do a wonderful job of helping that family, both with the mental piece, the physical piece, and the spiritual piece.
MYTH #7: You must be actively dying to go on hospice care
Eric Williams, Capstone Hospice: No, and actually you're going to get the best therapeutic effect from hospice earlier in the process that you do it.
When you get to a point when you really can't make things better, there's a gap. You know, it's like, what do I do with that? How do you help someone live until they die? That's a strange concept for a lot of people to think about. But, you know, there is that concept of how do you live until you die? How do I live more fully?
We're able to do much stronger work, I think, if we get the referral earlier. So that's something we spend a lot of time in the medical community and with the community helping them understand what it is and what it's not. So they're not afraid of it.
Robin Andrews Smith, Transitions Coach: Most people think of hospice care as active dying, and that is just not the case. Both the palliative model of care and the hospice are to support people while they are living and waiting for their body to make a natural transition.
The Medicare model in particular, there is a criteria called failure to thrive. What that means is that we are just no longer able to heal from a particular condition. We are still living with that condition, but we're not able to heal from it.
When we're still living with the condition, there's still so much we can do to support people and help them become more comfortable in their body within the context of the limitations that the disease has given us. I always encourage a family to check in with their doctor if you have a chronic condition or a neurodegenerative illness.
MYTH #8: Hospice is only for the elderly
Eric Williams, Capstone Hospice: A lot of people think of us as being only for seniors, but we have patients, rarely in their twenties, but some in their thirties and forties and fifties. So, you do get younger patients with cancer diagnoses. And so that's a whole other challenge and they really, really need support.
Robin Andrews Smith, Transitions Coach: I think the palliative and hospice models of care are very underutilized because culturally we have a hard time talking about death. We think of it as such a scary thing, and yet we are facing more and more chronic conditions where the palliative models are shown in the research to be actually the better form of medical care when chronic conditions don't have a treatment. Comfort care is the treatment being able to help people with their pain management, even more importantly, helping them with their relationships and making peace with the life that they've lived in.
MYTH #9: Hospice provides pain management only
Eric Williams, Capstone Hospice: We work with them not just from a nursing and physician perspective, but also a social work chaplaincy, you know, seeing the person in a holistic manner. There's not only the physical aspect, but there's the spiritual questions and how that impacts the person spiritually and emotionally and psychosocial and not just the patient, but the family.
Robin Andrews Smith, Transitions Coach: Hospice care also provides hospital beds. They provide walkers and bathroom equipment, all of the things that people are needing who are facing end-of-life care when they have physical needs and physical challenges that become a little bit too much often for a family or a family member to provide for a loved one. Hospice will provide caregivers, it will provide medical equipment, they will provide medicines, they will provide supplies, and they will often send in social workers, and chaplains. [It's] just this beautiful team to help a family let go of the disease and begin to move into an active space of getting ready and preparing for the transition.
Most often our hospice companies will provide chaplains, they will provide musicians or animal therapies. Anything that is really going to encourage someone into their heart space so that they feel really free and as comfortable as possible with making that transition and to be able to help them out of any fear. What we find is that people tend to live longer when they are not afraid.
MYTH #10: Hospice is expensive
Eric Williams, Capstone Hospice:
The hospice benefit was added in 1983 to the Medicare benefit and now there are more and more commercial payers.
Robin Andrews Smith, Transitions Coach: Believe it or not, palliative care and hospice care are completely covered by insurance. Medicare wants to offer this to our families living with neurodegenerative illnesses because, number one, it's so much better for the person and it's also much more cost-effective than going back and forth to the E.R. and trying to treat someone medically when there is really no treatment at that point. So it's a beautiful, beautiful service.
Bathing three times a week, supplies that families need, medicines, and social worker supports – all of this is covered by your insurance or by Medicare.
Because we're moving into a season of time where we have a lot of chronic conditions, and because now our medical model is able to keep people healthy and alive for well into the late stages of a disease, this is really becoming a very, very, very important medical model.
MYTH #11: Hospice means death is imminent
Eric Williams, Capstone Hospice: No matter how much prognosticating we do, nobody's got a crystal ball to see when it's going to happen. Medicare sets a guideline saying that the doctor's best guess, if everything continues the way it's going right now, we're guessing it could be six months or less.
We've had patients on [hospice] for a couple of years. [We recertify patients every 6 months,] but they can be on much longer than that.
Robin Andrews Smith, Transitions Coach: This palliative care model and comfort care model really actually extends life. There've been quite a few research studies to show this.
The research is showing that it extends life because people tend to relax into the space and it becomes more about the heart and about family and about the quality of life once we're really clear that this is not treatable any longer.
When you put together the combination of a personality and an illness and a will to live, you know, anything can happen.