An end-stage disease is a disease that is progressive in nature and cannot be cured.  Some examples of diseases that progress to end-stage include terminal cancer, advanced heart failure, chronic kidney disease, liver failure or chronic lung disease.  Eventually these diseases reach the last phase in their course.  Advance directive planning helps guide decision making when the end-of-life approaches with a terminal, or end-stage, disease.

This is an important point for discussion.  When people are diagnosed with a chronic, progressive disease, it is often in the first phases of the disease and not yet life-threatening.  Over time the condition will change as well as the treatments prescribed.  It is at the beginning of the disease when conversations about its course should be addressed along with advance directives; at the outset of any chronic, progressive disease.  There should be conversations addressing how much time on average will the progression take from the initial diagnosis to the end-stages of the disease; what will the progression of symptoms look like; how will the typical course of disease end and what are choices at each step along the way.

For example, when someone is diagnosed with kidney disease, there may be minimal symptoms at first.  Over time, a kidney specialist will follow various lab values and kidney function tests.  At some point, as the kidney function worsens, hemodialysis may be the next step suggested in the treatment plan.  This is quite a change in therapy and in lifestyle.  It involves surgery to implant a port for dialysis and trips to the dialysis center three times a week.  This is life changing.  Discussion about the risks and benefits of any new treatment should be thoroughly explored.  And discussions about what is important to you as the disease progresses in terms of the quality of life you can expect, are necessary.

For other end-stage diseases, there may come a time when one more trip to the hospital is no longer what a loved one wants to do.  Maybe they’ve had multiple hospitalizations in the last year or two and have had enough of trying to obtain relief for symptoms and yet they are just not feeling any better or declining with each admission.  The quality of life for that person may look different now then it did before and they may want to explore other options such as palliative care or hospice.

Regardless of the disease, preparing in advance for the final stage of life can ensure that wishes and choices are honored as best they can. It allows time to discuss the “what if’s” that may happen and what decisions have been made so family and healthcare providers are all on the same page.  Then the focus can turn to family and friends and whatever preferences are ideal for the individual.  Closure with individuals can be a beautiful time and a blessing many people don’t have an opportunity to experience.

If you or someone you love has a chronic, progressive disease, talk with your healthcare provider about the course of the disease.  What can you expect and when can you expect it?  Begin to think about how life will look at the various stages as the disease progresses and explore that in advance directives and with family, knowing that choices may change over time, and that’s okay.

“Life is what you celebrate.  All of it.  Even its end.” – Joanne Harris

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