It never ceases to amaze me.
“I can’t believe it has happened so fast”. I hear this so much. At least one family member says this during a meeting about end of life care. I know if one has actually said it out loud, others are probably thinking it too. The irony is that the majority of times, it DEFINITELY should not have surprised anyone. I want to ask them “IS YOUR HEAD IN THE SAND?”
What am I talking about? Let me give a scenario that is a conglomerate of a million encounters that I have had with patients and family members. The patient is 84 years old, was diagnosed with Small Cell Lung Cancer 7 years ago. In that time, the patient has undergone Cyberknife treatments, maybe chemotherapy, palliative radiation, blood transfusions. The patient has been hospitalized three times for complications of the therapy and has recently started a new drug therapy as part of a clinical trial. The patient has lost more that 50 lbs in the last year, is short of breath and on oxygen 100% of the time. The patient, who was once a hearty eater, now eats like a bird, only very very small portions if anything at all. Besides the cancer, the patient has a history of high blood pressure and high cholesterol, both treated with medications that have changed over the years to stronger meds and higher doses. Now the patient is in the hospital, is very very weak-can’t even walk from the bed to the bathroom. The body has not tolerated the chemo and the patient has been left anemic (not enough red blood cells and hemoglobin to carry oxygen around the body effectively). The cells in the blood that fight infection have suffered from the chemo as well. As a result, the patient is running a fever from having contracted a secondary infection they are now unable to fight. The hospitalist meets with the family to let them know that there are no other treatment options for the cancer and suggests that it is time to consider a different focus for the care the patient receives.
Enter the hospice RN. The family is present at the bedside and each member is in a different stage of anticipatory grieving (experiencing grief related to the expectation that loss is coming in the future). One member is withdrawn into the farthest corner of the room, tearful and wrapped in a sweater and protected by their own arms, locked across their chest. One is pacing the floor, with red swollen eyes, their anxiety makes it almost impossible for them to look at the patient. One member is sitting immediately at the bedside, looking so sad, holding the patient’s hand and they are talking, softly, as if they are the only two in the room. Another family member is front and center and takes the lead talking to the healthcare professionals who come in and go out. As the RN gathers information about the patient she asks “Talk to me about what led to the patient coming to the hospital this time……Tell me what you understand about the situation as it stands now”. The “talker” explains that the family is in shock. Last week the patient was up and around, even went out to dinner with them all. And then comes the statement that blows me away every time….”THIS HAS HAPPENED SO FAST. We didn’t have any idea that he/she was so sick. Now they are telling us that he/she is dying and that we need hospice”.
Now you might be thinking that, as a hospice RN, I have a better understanding of the clinical picture so, of course, I would understand that the patient is terminal. And there would be validity in the statement that “lay people don’t understand the diagnosis and treatments well enough to know that the patient is in imminent decline”. But I want to take that apart and look at it for what it really is…….FALSE.
Here is my case:
There is a group of clinical conditions which are 100% progressive. What does that mean? It means that no matter what, there is no CURE. Even with the best physicians, medications and treatments, the condition will continue to progress or advance. What medicine tries to do for us is two things a)slow the progression and b)minimize the negative impact to maximize the quality of life. But medicine cannot cure these clinical conditions. There is no cure.What are these terrible conditions? Coronary Artery Disease, Chronic Obstructive Pulmonary Disease (COPD), Liver Disease, Kidney Disease, Pancreatic Disease, Heart Failure, ALS, Dementia, Stroke and some Cancers.
WHOA! Don’t jump on your keyboard to respond that I have got this all wrong. Yes, medicine can manage these for YEARS in a way that allows for great quality of life for a long time. But that is not the same as curing these conditions.
Many people with progressive diseases are under the mistaken impression that the disease management that is happening (with MD appointments and medications and treatments and surgeries and therapies) is making the health problem go away. That’s just not the case. Even if a patient follows the MD instructions TO A TEE, the disease process is still there with very, very few exceptions. The progression is significantly slowed and the negative impact on quality of life is reduced. But it does not go away, which is the definition of “cure”. Even with cancer, we talk about remission, not cure…..unless all traces of the cancer have been surgically removed from the body. Yes, there are open and closed heart surgeries, but they are temporary “repairs”, they don’t remove the damage done or prevent it from continuing to occur. Yes, there are organ transplants, but the disease process that caused the organ to fail is still there, we’ve just bought a new timeline.
And let’s face it. How many patients do everything their MD tells them down to the last detail with 100% compliance? Even for a hospice nurse, 100% compliance is difficult at best. Add to that, many people have more than one health issue. Compliance with multiple disease management guidelines becomes more and more difficult. Imagine that you need to be on a heart healthy medication, diet and exercise program but you also have to remember to follow a program for your kidneys.
Given the information above, how can anyone with one of these conditions be even remotely surprised when a disease process reaches and end stage. Well, that is the problem. No one gives consumers of health care the information that I shared above. There are so many reasons why this critical piece of information doesn’t seem to reach the patient and their family members. Here are a few theories that have shown to be true over the course of a career in nursing:
- We must never destroy hope with something as damaging as the facts.
- We don’t have any real understanding of the nature of our own health issues.
- We don’t have a realistic frame of reference for outcome odds.
- We are misled into believing that everything is curable.
- Our healthcare providers don’t know how to talk frankly with us.
- We have bought into the TV myth of immortality and magical cures.
- We don’t know the difference between living and being alive.
- We think we are entitled to avoid difficult or painful information or situations.
So back to the patient in the scenario……..how can this patient’s decline or terminal prognosis be such a surprise? How can this patient and family be so unprepared for end of life? Tune in soon for a blog about possible answers to this question.