What effect would a serious illness have on you and your family?
According to the Journal of Palliative Care Medicine, a serious illness is a condition that carries a high risk of mortality, negatively impacts quality of life and daily function, and/or is burdensome in symptoms, treatments or caregiver stress. It can also be referred to as a severe illness. Let’s unpack this definition.
A serious illness is a condition with a high rate of mortality. Several examples include heart disease, accidents (unintentional injuries), cancer, chronic lung disease and stroke. If you were diagnosed with one of these illnesses, what impact would it have on your life as you now know it? What about your family? Before reading the next paragraph, pause for a few minutes to reflect on this question: Right now, today, if you were hospitalized with a heart attack or if you sustained injuries from an accident or were diagnosed with cancer…how would that impact your day-to-day life?
A serious illness negatively impacts quality of life and daily function. Consider the impact on your ability to go to work every day or stay at home and care for the children or maybe even care for your parents. Who could take over or share that responsibility? The ability to physically move around in your environment as you normally do without even thinking can change over a very short period of time. For example, in the case of an accident or a stroke, your ability to speak or walk or chew food or climb stairs could be impacted. Playing with your kids or grandkids, driving a car, walking or even standing for long periods of time and many other aspects of your daily routine could change and you’d be coping with a new kind of “normal”. You may even have to live in a facility outside of your home for a period of time.
A serious illness is burdensome in symptoms, treatments or caregiver stress. Often times multiple specialists may be required to manage a new serious illness. There can be several medications with unfavorable side effects and doctor or therapist visits, rehabilitation, scheduled treatments with long durations and intense schedules and all of this may have you feeling exhausted. I know for myself my whole demeaner changes if I am not feeling well. Adjusting to chronic symptoms or changes in body functioning can take its toll. Who will be there to help in your care? How will their life be impacted? Who can you ask for support?
This can all become overwhelming and is not easy to talk about; for the person with the illness, for their family and support systems, even for medical providers. Conversations are essential at the start of a serious illness so each individual can explore what the best type of life is for themselves and their family; how to better cope, both patient and family; how to improve each day and how to reduce suffering.
To actually have a plan for the short and longer term, instead of thinking without acting, I highly recommend sitting down with family and healthcare providers to discuss advance directives. Start with a good understanding about the illness and its course; discuss you’re your provider how much you want to know about the disease and what’s coming next and decide how much you want your family to know and when you want them to know it. Determine what really matters for the future of your health and what you will endure to gain more time with your loved ones.
Your health goals at the start of a serious illness will look a lot different over time as expectations and the disease process itself changes. Priorities and goals shift as health declines. You can find ways to manage symptoms and feel a sense of control, especially when the serious illness advances. Be better prepared and involved in what you really want by starting the advance directive process early. You don’t have to feel confused about it all or like there isn’t anyone who can help.
“What I realized is, we were not really talking about death. We were really talking about; how do you live a good life all the way to the very end?” – Atul Gawande