I sat in the hospice Interdisciplinary Team Meeting this week as the RN Case Manager described the perfect example of a patient going up the “Down” staircase. I can remember as a kid, my mom joking about people who would used the “wrong” side of the staircase to go up, the conventional wisdom being that one should always stick to the handrail to your right regardless of whether you are going up or down. This would insure that two people would never run into each other. If she met someone going up with their left hand on the rail, she would say they were going “up the down staircase”. This always made us laugh a little. Now as I have become a grown woman and a hospice nurse, I have another use for the phrase. It applies to the particular way some people decline as they prepare to leave the world as we know it. I feel the need to talk about it because it really is hard for family members and loved ones, sometimes, to travel up the down staircase with the patient. It isn’t the decline that is expected and because it isn’t, it is sometimes harder to accept.
The common wisdom about decline and death is that it will occur in basically one of two ways: A person will become ill and then will slowly, over time, decline in a pattern that is predictable. It is tolerable to those who are watching and waiting. When the last breath comes it is expected. OR: A person will pass away suddenly, with no warning, it will just happen, no indicators that it was coming, just gone. Everyone is in shock together, trying to piece together any hints that were missed, any clues that were hidden.
But there is another way that is commonly associated with progressive illnesses and that we see quite often as hospice caregivers. The staircase.
Mrs. Belknap (not her real name) was in her early 80s and had, for the last 15 years developed progressively worsening heart disease. With her doctor’s help, most of her symptoms were managed with medications but over the last few years, she had become less able to do her daily activities without becoming short of breath. Then one day, she lost her balance and fell, breaking her right arm. It wasn’t a serious fracture, it was put in a cast and she healed in a reasonable amount of time but after that, even though she did not hurt her feet, ankles, knees, hips or back, she felt much weaker when she walked and now she required a walker to get around her house. In other words, she took two steps down the staircase (the fall and fracture), one step up (healing but now she is weaker). A year went by and over time she began to need oxygen to do her daily activities (one step down). She also finally had to accept her son’s suggestion that she have a part day helper around the house to do laundry and cleaning and to cook at least one good wholesome meal (another step down). At her next MD appointment, her doctor changed her medications and this made a big difference in getting excess fluid off her lower extremities and her lungs and she felt MUCH better doing her activities (one step up) but she had to get up in the night to go to the bathroom a lot. One night, she tripped on her shoe, fell and broke her hip. (Three steps down) She required a surgery to repair the hip (another step down) and 6 weeks in rehab before she was back on her feet again but thank goodness she was pain free!(two steps up) However, she had lost weight while in the rehab facility and once home, she needed a higher amount of oxygen to do her daily activities, even with the helper. She felt more confused at times and she could not remember where she put things down in the house or what she was going to do. And she had new medicines she did not know how to take without help. (one step down). Over the next 6 months, she got weaker and weaker and more and more confused. Despite several medications changes, her swelling in her feet and legs got worse and so did her shortness of breath (one step back). One night, she could not get her breath without sleeping sitting up in her chair. (one step back) The next day, she had to call the ambulance because she could not get her breath at all, even with her oxygen on. After 11 days in the hospital, the doctors had stabilized her and all the extra fluid was off her heart and lungs and lower extremities and they sent her home. (one step forward)She was breathing better but she was extremely weak and tired. She went to bed and said she did not want to get up. When offered dinner, she was not hungry. For the next few weeks, she barely ate at all and still did not have an appetite. She lost weight and became weaker. She would only take fluids. Her son took her back to the hospital because her breathing became rapid and shallow and all of her swelling came back. (Two steps back). The doctors got the fluid off, got her breathing more comfortable and recommended hospice.
For many patients with a progressive illness, the path is up a little, down a lot, then recovering a little, but declining again. The overall decline, ultimately is greater than any of the recovery gains. This is so difficult for hopeful loved ones and family members who see each marginal recovery and want to believe that the decline is over. But in the face of a progressive illness like Congestive Heart Failure, Chronic Obstructive Pulmonary Disease, Liver Failure, Kidney Failure, Cancers, there are brief improvements while there is overall decline. Hospice team members are professionals at helping the patient and the family prepare for the decline and reconcile with what is coming but more importantly, hospice can help the patient make choices for themselves during those up and down times and even better, get them onto level ground. The goal of the RNCM is to see her patient have symptoms under control on a day to day basis. No fluctation up and down. Hospice helps patient choose where they want to be, how they want to be cared for, what their goals are for comfort, for assistance, for activities and rest, for interventions and spiritual support. Hospice helps get them on the correct handrail and so the are not going up the down staircase. Hospice is meant to stop the trips to the ER by caring for you where you live, where you feel most comfortable and where you prefer to be. Symptom management is aggressive and doesn’t require waiting until pain, shortness of breath, nausea or delirium spiral out of control. The hospice nurse comes to the patient faster than a patient could get to the ER. Hospice is as easy as walking down the stairs.