Q: I am so happy that I can talk to you. I am an 89-year-old lady who has had a very rich, successful life. My husband is not with us anymore, but I did enjoy a long and happy marriage. I had a career, and I also had children. Now I am a grandma. So what seems to be the issue? In 2005, I had the misfortune to be diagnosed with thyroid cancer. I have been fighting this horrible thing for almost 10 years now. I was winning for a while, but I am not anymore. The cancer has spread to other parts of my body. My wonderful doctors are not giving up at all, but I know we are running out of options.
I am having some issues now with a very hoarse voice. I also cannot swallow well. All my food and most of my pills have to be crushed or prepared soft. I am also starting to feel as if I am losing my breath. That actually is my biggest issue. I actually do not fear dying. I know that this is strange, but I do not.
I do, however, get scared that I may be choking to death and I worry about pain as well. The thing is, I do not want to go any place. I want to stay home and to have it all on my terms. My kids all live out of state and want me to move in with them. I actually have a choice of three different locations. Nevertheless I am staying home. Do you think it is possible?
A: I truly get inspired by my encounters with patients all the time. I get humbled by the wisdom of the people I interact with. Grace was a patient I saw in the hospital. She left an impression. We all want to be like her, and I am no exception.
She was completely independent. She lived alone and had no help. She was driving, managing all her affairs and her mind was sharper than mine. Yes, she worried about her memory but, rest assured, Grace was an ideal 89-year-old lady. Many people thought that Grace was simply crazy. Why not get some help or move? Her kids were very worried about her as well.
How does one face catastrophic illness? Many books have been written about it. The famous Swiss-American psychiatrist Elizabeth Kubler-Ross divided reaction to catastrophic news into stages. In 1969 she wrote the very important book "On Death and Dying," in which she outlined how she thought people respond to extreme awful news. The five stages she described are -- denial, anger, bargaining, depression and acceptance. She acknowledged that we all go through these stages differently. We may jump between them, skip some and return to others.
Having said that, denial is often the first reaction we have to tragedy. Many people just do not believe the news. I see this all the time when diagnosing dementia. Often, the families just not ready to hear the diagnosis. People rationalize the information. Usually, there will be an event that they will attach the diagnosis to. There might have been surgery, an accident or a death of the loved one.
The next stage is anger. Anger can be directed at others -- sometimes, loved ones may even direct their anger at the person affected by the disease or catastrophe. For caregivers and health care professionals, it is crucial to acknowledge that anger is not a personal attack. Sticking with the sick person and not giving up on them at this stage is very important. When anger proves to lead to nowhere, many people move on to bargaining. In this stage, we pray, promise to be different and even make amends for past wrongs, hoping it will change the course of our catastrophe.
Depression comes after bargaining. This is when inevitable sinks truly in. Life stops having meaning. People will refuse treatments, dismiss best friends, or isolate themselves. Experts say depression, and the detachment that comes with it, are the introduction to acceptance. It is believed that, by removing ourselves, we take shelter from additional sadness and hurt. This is a completely normal reaction, but it can be dangerously incapacitating for an affected individual.
The final stage is acceptance. Now the person suffering with the new calamity is actually at peace and ready to take it on. This is the stage that Grace was in when I met her.
Initially the work of Kubler-Ross derived from observing and talking to people who were dying, but the stages she outlined can be applied to many other life situations, including being diagnosed with a chronic illness. Grace's diagnosis of cancer did turn into a chronic illness. She was fighting this thing for nearly a decade.
I really believe that Grace deserves to have her fears soothed and to be allowed to live every minute of her life according to her wishes. This is exactly why I recommended that Grace talk with a hospice team. What? Why? You may ask. After all Grace is not actively dying. That is the point. Hospice, primarily, is a philosophy of care -- not a building or a place. It means that addressing the sick person's wishes and fears is a priority. You see, Grace can stay home. She can avoid suffocating to death. She can have her increasing shortness of breath successfully treated with medications early. Suffering should not be part of an advanced illness and can be dealt with. I am hopeful that Grace will be blessed with many good days after going home. A nurse from hospice will visit her regularly at home and, if needed, assistance will be provided to her with aides, social workers and a chaplain. Her family will be kept appraised about how Grace is doing. I thought about Grace a lot. She is an example of what we all want -- to be independent but also insightful and to be in control to a very end.