Tough decisions about Progressive/Terminal ailments
We are mortal. But we hardly like to pay attention to that very fact.
We have preferred to focus more on making our lives better FIRST, and our greed to live better is the core reason behind the progress made by science and medicine, so much so that we cracked the vaccine for the unknown COVID-19 virus in less than one year, which is unprecedented in history.
Science and medicine have one common goal: saving lives, but they have certain limitations. Ageing is inevitable, and mortality is the ultimate truth. But our never-ending greed to live more makes it difficult for us to accept the flaws/limitations of what science and medicine can offer. Relentlessly, we continue trying to fix the body even when full recovery is impossible. In turn, the race to win against nature can add lots of pain and anguish to the sufferer as well as their family members, leaving them questioning the choices they made.
We must consider how much we rely on medicines and how much we should let nature take over to avoid regretting our choices. This question is more relevant when we deal with progressive or terminal ailments combined with ageing. Let’s understand more about progressive ailments and the points to consider if you are in a similar situation.
Progressive/terminal ailments:
Progressive/ terminal/ incurable/life-limiting ailments are interchangeable words for ailments in which science cannot offer much but a little help. Such ailments are progressive, not likely to have any cure and eventually will lead to death at one point in time. Advanced heart ailments, advanced cancers, organ damage, lung fibrosis, and neurological ailments like dementia, Alzheimer’s, and Parkinson’s are a few examples where ailments are rising every day, and efforts are usually made to make life easier for patients than curing them fully.
When it reaches a certain point, the situation might demand decisions about various questions, such as whether further treatments should be given, including hospitalization, surgeries, other therapies like immunotherapy/ chemotherapy, keeping patients on ventilators, and placing various devices, including a feeding tube, dialysis catheter, permanent tracheostomy, and many more.
The problem is there is never a straight answer, as the questions are related to our loved ones, and the fear of losing them or hurting them drives us crazy and stops us from thinking in a straight and unbiased way. In this situation, the following points are worth remembering;
- Deciding priorities as a Family:
- Asking the right questions to the doctor
- Understanding the mindset of the patient
- Asking the right questions to the patient:
When old age and terminal ailments combine, the right questions become uncomfortable and hard to ask. Additionally, it’s a human tendency not to get into uncomfortable situations, and unfortunately, we prefer to avoid asking such questions when dealing with our elders’ ailments. However, it is essential to know about the patient’s mindset. It is a fundamental human right for them to make decisions for their lives, and it is not necessary for them to feel the same way as you do.
But when things start falling apart, it is usually quick, and you might miss the chance, so it becomes imperative to have clarity firsthand about the patient’s mindset.
Keeping this in mind, check
– What are their concerns about their deteriorated health? Are there any unfinished affairs which they want to resolve first?
– What worries them the most? Family, finance, any unresolved issues, etc.?
– Are they fearful of the side effects of treatments/surgeries and not receiving any fruitful outcome?
– What kind of side effects are they okay with?
– How much do they want to fix, and what kind of treatments are they willing to take to give them a chance to live a little longer? Including aggressive treatments, surgeries, feeding tubes, keeping on ventilators, etc.
– How much pain is bearable for them?
– If they are unable to decide, who do they want to sign a risk form with to decide on their treatment?
– If things start falling apart, what is more important for them? How would they like to spend the last days of life?
– Are they willing to donate any organs?
– Any preference for their funeral?
- Deciding priorities as a family:
A hardcore reality in the case of terminal or incurable ailments is that the path is going to end at one point—time is the only unknown factor, and the whole family goes through this challenging process with the patient. It is indeed difficult to suffer, but it is equally difficult to see our loved ones go through the pain. It is natural to feel scared and confused about deciding on further steps. In such situations, it is best to come together as a family to make joint decisions beforehand so the process becomes manageable.
A few points are worth considering.
– Checking the sources of finance and insurance, if any. Medical has become a pretty expensive affair. It becomes easier when you know the sources of finance and how much you can spend.
– How much should the patient be involved? Once you understand the patient’s mindset, continuing to involve the patient and adding anguish becomes irrelevant.
– There is a preference for spending the last days together. Decide whether to continue taking chances or focus on reducing the patient’s pain and spending the last days together before saying the final goodbye.
– Any alternative therapy to explore instead of allopathy.
– Who should be the decisive one in case of critical issues?
– Any unresolved points– so there is no regret later.
- Questions asked to the doctor:
We must remember that doctors are trained to save lives by offering various treatments. They are not trained to understand human psychology. When we need to decide the right treatment for our loved ones, it is important to get clarity by asking the right questions to the doctors. It sounds simple, but people often miss asking important questions to doctors before undergoing various treatments.
Consider the following;
– Get clarity about the ailment in simple, easy-to-understand language. What are we dealing with? What to expect further? How much can we fix? What kind of surgeries/treatments do we need to undergo in future? What are the other options in lieu of surgeries/ aggressive treatments? At what stage is it likely to end?
– Will surgery or a new treatment fix the current problem? How much can it benefit the patient? What could be the side effects? Are side effects worth taking to fix the current problem?
– What could be the unseen/unexpected outcome of a new treatment?
– What is the best solution to make life easy for the patient? Surgery or just taking supportive medicines to reduce pain?
Life is all about choices. Every stage of life brings a different challenge, giving us a chance to live on our terms and write our story.
But at the same time,
It’s alright not to continue to fight and opt for mental peace.
It’s alright to say, let it go.
Death is not a failure.