I saw the owner of the small gift shop approaching me as I browsed through the cards. "May I help you find something?" she asked. I told her I was just looking around and asked her about the sign I had seen posted, "Going out of business due to health reasons." We chatted for a while and she told me the story of her diagnosis with lymphoma and the subsequent unsuccessful treatments. She said that several months ago she ended up in hospice and was ready to go. But then something happened, and she just started to get better. She began to be able to get out of bed and walk some and eat more.
After a couple of weeks of continued improvement, she and the family were so encouraged that they revoked- signed out of -hospice, and she went to a tertiary center for more treatments. She was feeling better, but still needed to close her shop because it had all gotten to be too much.
I celebrated her improved health with her. She summed it up saying, "You just never know what God has planned. Sometimes we think it's the end and then it's not."
Our conversation got me to thinking about times when hospice nurses and families have to reconsider a hospice diagnosis. And it does happen. Sometimes people are very ill in the hospital, the situation looks grim and improvement seems far off and unlikely. But then, for a variety of reasons-miracles included!-they go on living and enjoying life longer.
At other times, patients are admitted to hospice with a terminal diagnoses such as Alzheimer's or long term lung disease or end stage heart disease. From the time of admission, hospice nurses are careful to educate the family that based on the currently available information the medical team feels like the patient has six months or less to live. However, this is subject to change and reconsideration. We have certification periods of 60 days and each patient is re-evaluated for hospice appropriateness at regular intervals.
I remember one case in particular where I admitted a gentleman who was a resident of the nursing home. He had a bedsore, had stopped eating, and suffered all the symptoms of advance dementia. Without reservation, I admitted him thinking he had but a few days to weeks to live. I was surprised when he began to improve, began to eat, started to sit up for his meals and continues to occupy the same bed at that facility, now a year later! He was discharged from hospice and although he did not recover, so to speak, from his dementia, he did become stable for the long term and no longer needed hospice.
"Graduating" from hospice is not the usual pattern, but it does happen from time to time. As hospice workers share information with patients and families, they try to make it clear that signing into hospice is not giving up hope of a miraculous cure-as long as there is breath there is hope. However, accepting hospice does mean a shift in the focus of care: from interventional to comfort driven.
Sometimes the decision about whether or not to admit a patient to hospice is easy, aided by diagnoses that clarify choices: end stage metastatic cancer; a devastating stroke; respiratory failure without sustainable respiratory effort. Also, Medicare helps us by setting out very specific guidelines that outline hospice-specific criteria. But other times, the water is murkier and the way forward seems confusing.
In hospice, the whole team is involved in making care decisions. First of all, a physician referral is necessary-that must come before anything else. Then, a nurse does an evaluation to determine if the patient meets hospice criteria. Finally, an interdisciplinary team discusses the case and this includes the nurse doing the eval, an administration nurse, and a medical social worker. Together, the team decides if the referral moves forward to an admission.
Sometimes it is hard for the patient and the family to know when it is time to call in hospice. This is especially true of long and slow degenerative diseases. I remember one case in particular. Elisabeth and James lived out on a farm, in a modern log cabin surrounded by rolling hills. When I arrived, the middle-aged patient sat out on the deck, in a specially crafted chair, enjoying the sound of the creek nearby. Elizabeth wanted to sit outside to take advantage of the early spring sunshine as talked about hospice. I provided this family with information, and they shared some of what their lives were about. This devoted couple enjoyed their grandchildren and cherished the time they were able to have with them at their farm. Elizabeth also enjoyed painting and shared with pride all the different things James had done to help her adapt so that she could continue to paint.
After a careful assessment of her physical condition and the increasing limitations she suffered, I asked them both for their thoughts on hospice and how things stood. She deferred to him; he hesitated and then said, "The doctor says whenever we are ready. But I'm not sure." I knew that while she did meet the official criteria for admission to hospice, emotionally they were not quite there yet. I told them we would re-visit the conversation whenever they were ready to talk again. As he walked me to the door, I said, "James, when she doesn't want to paint anymore, then it's time to talk again." He nodded in agreement and I could see the relief in his eyes.
Making a decision for hospice is rarely straightforward. It can be a destination at the end of a long road or a completely unexpected turn of events. But it is important to understand that hospice can always be re-evaluated and that it is not always a death sentence.
