- InAdvance Consortium
There Is Still A Lot To Do
Pedro L. González, MD
Digital Health Consultant
Chronic Illness and Emotions
Having a chronic illness will mean different things to different people, and to different people at different stages of the disease. However, chronic illness in its late stages elicits a strong emotional reaction in many. Digesting news of your disease can bring a flood of emotions. It is about knowing how to deal with the explosion of positive and negative feelings and spiritual concerns that predict the quality of life you may have.
This was the case of John when he was told that his chronic bronchitis was entering a final stage. He knew it intuitively since he carried some weeks with more frequent bouts of shortness of breath and his lungs where producing much more mucus than they used to.
But when the doctor told him, he felt very angry against the doctor and everyone who seemed to support his opinion - He was only 75 and he still had to see his grandchildren growing and his little daughter getting married. At the same time, he felt guilty for having smoked for so many years and even with the diagnosis of COPD (Chronic Obstructive Pulmonary Syndrome) he smoked until his lungs stopped him.
He thought of himself as a survivor. “This cannot be happening to me”, he told himself many times. That is why he passed through a denial phase. “Trips to the bathroom were frequent during the night. You convince yourself that the grey sputum that day was because of the polluted street you rode on the day before”, he explained.
But in the end, he had to accept what was happening.
He was scared by the thought that he was in someone else’s hands. He felt vulnerable, and he was anxious about the follow-up appointments.
But then he met Carlos, a carer that was contracted by his daughter to help him during the day. Carlos gave him time to revisit the state of his life. He helped John see life differently. John started questioning his values and reasons for being here. He started to enjoy his time in a meaningful way.
Palliative Care and Emotions
Palliative Care helps enjoy a good quality of life for people with a life-threatening illness and their families providing tailored physical, emotional, spiritual and psychological support. It can be started at any time of a serious illness.
Palliative Care delivery can also be improved through Digital Health technology. Mobile applications have the potential to improve education and training in palliative care. Carlos was also using a mobile health application that taught him how to help in giving John a new perspective on his situation.
If John would have received palliative care support from the start, from the moment when he was diagnosed with COPD, it would have made it easier to deal with all the emotions, to plan the remaining of his life, and to increase his and his family’s quality of life.
As his doctor, I need to say that the combination of family, true friends, a positive view of life and some good habits played a major role in preventing his negative emotions and thoughts from taking his life to a dark place.
It’s hard to understand so many combined emotions and overwhelmed feeling when you are fighting for your life. At times, he felt very frustrated because he was an active person, and the illness drained the energy from him. Also, “I had to overcome physical and emotional issues to become 'me’ once again”, he explained.
Now John is waiting for his final days. But if you talk to him, he will explain that it is precious and can be wonderful. “Family and genuine friends mean the world to me. Those simple things, like a walk in a park, today mean more than ever”, he says.
He doesn’t need anymore. He is much stronger than he was before. “I think that this is due to the fact that I know my weak points better now, and I know who my friends are”, he says.
But truth is that he has been able to deal with all this as another phase in his life. One from which he extracts the best and he even has the strength to help others in a similar situation.
While coping with mental and emotional distress is an important part of the process, end of life and palliative care support can also bring a new opportunity and a new meaning to this final stage. He assists me in dealing with other COPD patients in the final stages to instil into them the idea that there is still a lot to do.
Tips for Coping with Chronic Illness. Donna M. White, LPCI, CACP. https://psychcentral.com/blog/tips-for-coping-with-chronic-illness#1
Coping with Chronic Illness. MedlinePlus (US National Library of Medicine)