dementia — Hospice Blog

Hopespotters! I have essentially neglected the professional side of my blog and for that I am truly sorry. Those of “in the biz” know that sometimes talking about what we live on the daily, can be exhausting. My kiddos are back in school, however, and I am motivated to share (hopefully) valuable messages.

My primary job in hospice is to evaluate patients referred to us, as well as provide information about hospice to them and their families. Mostly, I love my job. I love being the first, intentionally positive, face that these scared and sick people after the word hospice has been uttered. I know it is likely the worst day of their lives and yet I have the sacred opportunity to deliver them some hope.

For more than 10 years I have continued to hold the belief that while hospice can't change the outcome of your or loved ones illness, it can certainly change the experience of it. HOWEVER, I'll admit that I’ve done this long enough to identify some of the frustrating interactions. If you are a hospice professional reading this, I hope you can identify. If you are an individual whose loved one may need hospice in the near or distant future, I hope you remember these things.

Saying “hospice” does not speak death into being. Friends: I understand that the word hospice has a scary connotation. Most people in word association would put death next to the word hospice. Those of the older generation are particularly afraid. I understand. First of all, hospice regulations stipulate that a person alert and oriented must be told that they are receiving hospice services. Asking the hospice provider to do otherwise puts their license in jeopardy. Furthermore, while I realize it is scary, please share with us some trust. Every single hospice clinician understands the fear that may come from the word hospice. And you, who have come through a medical system known for lack of communication and teaching, have landed at our feet. PLEASE give us the opportunity to be honest about what we can provide and what our shared goals can be. Asking us to take off name tags and not say “scary words” is equivalent to asking us to make your 80 year old parent believe in Santa Claus. 99% of the time the patient knows better than anyone else what is going on and NOT being honest can be the scariest thing of all.

2. I don’t make the rules. Hospice, like all other aspects of healthcare, is governed by rules and regulations. When Dame Cicely Saunders developed the concept of hospice at St Christopher’s in the 1960s, it was for cancer patients only. I am infinitely pleased that it didn't take us long to learn that people die from other conditions and hospice needs to provide care for those people, too. When President Reagan made hospice part of the Medicare benefit, it was a wonderful thing that brought with it governmental restrictions. Understandably. Terminal cancer has a predictable decline that fits the hospice model; chronic disease like heart, lung or kidney don't meet that predictability the same way. And that’s not even to mention dementia or plain old debility. Add to that hospice programs that have, too frequently, abused the benefit and here comes the scary harsh restrictions and scrutiny. I work for a small, non profit, highly ethical hospice. The HARDEST part of my job is being called to an evaluation for someone who is ill, not enjoying quality of life, requiring significant personal care and trying to explain that the patient doesn’t qualify for hospice. Especially when the referring doc and the competing hospice have said that the patient does qualify. Families: please understand, Medicare puts out guidelines. Guidelines are open to interpretation. Each hospice entity must make the evaluation with the best information, but at the end of the day, it's a ‘best educated guess’. Please understand that to keep a hospice in business, so that it can continue to provide care for more people, regulations must be abided carefully. And the fact that the regulations stipulate someone be “half dead” sometimes to qualify with a chronic condition, is not something I wish to defend.

3.. I can’t make this go any faster. Per the above, I get many calls for evaluations for patients, most often with dementia, that are dismayed when I cannot qualify them for hospice. On this point, I want to be perfectly clear: I get it. I am sorry. Every DAY I am asked to see patients who are confused, incontinent, and completely not like their former selves. I sit with their children trying to explain why they don’t qualify for hospice, but I want to reach for their hand and say, “I know you love your Mom/Dad and I know you don’t really want them to die, but I know that watching them in this existence is hideous. You want hospice because you want to know that you are near the end and I hate myself for telling you that may not actually be the case. Forgive yourself for these thoughts. Visit them when you can but guard your heart at the same time. Mom/ Dad doesn’t want to be remembered this way.” Hospice is great care for end of life, it is not chronic geriatric care. I wish that existed so that I could offer it to these tear welled eyes.

4. I can’t make this go any faster/ or slower. Hospice can, at times, be a tale of two cities: the best of times, the worst of times. When evaluating someone with dementia or chronic disease, I hate disappointing needy family members by not being able to provide the service. The flip side is meeting a family with an acutely ill loved one, often with cancer, young or old, who have reached the point of crying for mercy and hospice is brought in. My initial job is somewhat easier in that scenario because I know I can dispatch the troops to provide assistance and comfort. For me, I get a little caught between do I go away entirely because the team is in charge or do I stay in touch so they don’t feel abandoned since they placed their trust in me initially? When I stay involved, I am always perplexed by/ troubled about how the loved ones respond to the actively dying process. In the hospice world, we often compare actively dying to active labor- the final stage before a critical transition. Just like in child birth, some people accept that nature is dictating the course, but others panic and want a quicker resolution. In hospice, our singular goal is to eliminate the suffering of dying from the patient and their loved ones. How quickly or slowly this process goes, is not in our control. Believe me, we understand the icky factor and the accompanying anxiety. Above all, we get this.

5. We really do care, probably more than you know. It is hard to genuinely convey to a patient and family that you’ve just met, how truly moved you are by their situation. As a hospice clinician, it is very common to have someone say, “I don’t know how you do what you do.. You must be very special.” The sarcastic side of me wants to side grin and say, “Well, yes I am” but the true answer is there is much to gain for those of us who do this work. In the best cases, with the best teams, whom I presently work, the fact is the pain we see really does hurt us. Suffering and a bad death are as devastating to us as it would be to a heart surgeon who lost a patient on the table. Death is not our enemy but suffering is. We are not Angels, if we are in it for the right reasons, but we are tireless advocates. The rules frustrate us as much as they do the lay person. The inadequacies of the healthcare system in dealing with the advanced ill wound us. Our desire to help tend to the dying and their loved ones is a passion, often ignited by disgust in what the ordinary healthcare system ignores. And while we care deeply, our job is a job and we must keep your loved one in the same priority Iine as all the other for whom we care. Please allow us, especially as nurses, to introduce you to to the other members of the interdisciplinary team so that you and your loved one can be supported best.

SO there is my first top 5 list. Bloggers agree that lists are the “thing” to capture readers. My hope is this list captured readers who might be helped by these thoughts.