How dare you ……..

It happens enough that I want to blog about it. Its about a recognition of the reality, not a disregard for life.

Often, the staff and administrators at a nursing home will see that a patient is declining and that the time to talk about hospice has arrived. They contact the patient’s family members and invite them to the facility for a meeting. During the meeting, they attempt to show the family that the patient is declining and that they feel that it is time to discuss hospice. The response, in my experience, is often “HOW DARE YOU”! The family members react with anger. They can’t believe that anyone is ready to “give up” on their loved one.  They are incensed that someone would suggest that the patient is beginning to show signs that they are declining. How do they know? Well, there are a group of early red flags that present themselves almost 100% of the time, regardless of the patient’s diagnoses.  The red flag list has been developed by studying data from thousands of patients who receive Medicaid and Medicare.  Here is a short tutorial on early possible indicators of end stage decline is in order here…..

Unintended weight loss-patients are eating less and less and losing more than 10% of their body weight over a 3-6 weeks.

Frequent falls-falling despite clearing barriers in the home/living space

Skin breakdown-developing pressure ulcers/wounds despite caregivers turning and re-positioning patient frequently, wounds that just won’t heal despite good skin care and attention to the wound

Frequent infections-especially urinary tract infections, pneumonia, sepsis (blood infections)

Frequent hospitalizations– more than 3 times in 12 months, especially for the same health issue

Increasing dependence with activities of daily living (ADLs)-Unable to bathe/shower without someone supervising or without an assistive device like a shower chair, unable to dress without help (buttons and zippers are difficult to  manage), unable to choose clothing appropriate to the weather, needing prompts on how to use the toothpaste or toothbrush, unable to manage finances or recall when or how to prepare meals or eat, needing to be fed or constantly prompted to take a bit or a sip

Decreasing mobility-needing help to get into or out of bed, up or down from the sofa or chair. Unable to walk any distance without a walker or someone to help with balance, needing a wheelchair for mobility. Not able to stand alone anymore.

Difficulty controlling symptoms associated with heart disease/failure, chronic obstructive pulmonary disease, liver failure, kidney failure, stroke, ALS, Cancer. Patients have repeated trips to the ER or to their MDs office (walk-in) because the regimen they are on is not keeping them comfortable and flare ups are unpredictable and frightening.

Dysphagia-difficulty eating without choking, pocketing food in the cheeks without swallowing, aspirating (getting food in the airway), food falling out of the mouth while eating.

Increasing weakness and debility-unable to tolerate activity without shortness of breath, unable to stand for more than a few seconds

Social withdrawal-not going to activities, finding reasons to stay home, declining visitors.

Why urge compassion when family members react to this news with anger? This anger is a reaction that is masking something else-and sometimes that is FEAR. But where does the fear come from? The family members are usually adults, mature people who certainly should understand that we get old and that we will eventually pass away……..or do they?  We look to developmental psychology to understand how these adults can be afraid and angry.

Developmentalists theorize that we go through a series of stages of personality development as we grow, age and mature. For example, when we are infants we are self-centered, behaving to elicit a reaction in our caregivers to meets our needs first. Crying when we are hungry, for example, alerts our mother to feed us. This is protective, it keeps us alive. Obviously we could never expect an infant to understand the world the way a 25 year old might. Further, developmentalists suggest that as we approach our 70s, 80s and 90s, we become more in touch with and unafraid of our own mortality. In those years, we begin to see peers age, become sick and die. We see that this will happen to us. We have become comfortable with our beliefs about life, death and whatever comes after death (everyone has their own idea, not disputing any). Many are ready when their time to pass approaches.

And here is where the problem can arise. Adult children, watching as a parent ages, are not at the same developmental place. Developmentally speaking, adult children are in the most productive phase of their own life. At age 30-55ish humans are raising families, in generally good health, haven’t had peers die (unless as a result of an accident), are focused on activities that involve community and society. But, and here is the kicker, generally not thinking much about mortality. And not ready to discuss death and dying as related to aging or aged parents. It’s as if the mental image of mom or dad does not include recognizing that they are getting older and their health is declining. In fact, it is so counterintuitive tfor the 30-55s to think about human mortality, it makes them afraid. It is putting the hard truth in front of eyes that are not emotionally prepared to look at it. The fear is masked with anger, mostly because we are all more comfortable showing others and experiencing that we anger than fear. Anger gives us a burst of adrenaline that carries us through trial.

Compassion is the only good response. In any difficult situation, we are all just doing the best that we can. We bring the tools and skills that we have to the moment even if they are not the most effective or constructive tools and skills. We have not been prepared for this moment, have received no anticipatory education from the experts around us.

So when the long term care facility says that mom is losing weight, her adult children say it is because she won’t eat the food-she doesn’t like it. The truth is, she will only eat the smallest amount of any food brought to her, no matter what it tastes like.

When the facility says that mom is becoming withdrawn and doesn’t go to bingo or movie night anymore, her children say she is bored or depressed or doesn’t have the energy. The truth is that she is pulling away from relationships and social interaction as she begins to physically decline.

When the facility says that she is getting weaker and cannot tolerate activity, her adult children say “then let’s get some physical therapy to get her strength back”. The truth is that her body is not in a strength building phase, unable to build muscle and stamina.

When the facility says she is not able to eat anymore without choking and aspirating, her children ask to have a feeding tube inserted to give her the nutrition that she needs to stay strong and healthy. The truth is that the brain recognizes the decline (or the advancement of the disease process) and not only turns off hunger sensation but also tells her mouth, tongue and throat to forget how to work together. In addition, it tells the stomach and intestines to slow down.

But who has been taught that these are normal changes and to expect them? Few have. And so, when the facility says “We think it is time to talk about hospice” the response is “HOW DARE YOU……”







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