Friday, February 17, 2012

What you Learn Makes a Difference - a followup post

Even when the news isn't good, sharing plans for the future can bring people closer to their loved ones and ease fears.
After talking with some caregivers in the last two days, there definitely needs to be a follow up to my last post that covers the time when what one learns as either a patient or a caregiver is not good news.

Who likes bad news? No one, of course. Particularly within the realms of health, many people work under the assumption that denial is easier than knowing a difficult time may lay ahead. I realize I am an optimist and always look for the good in a situation and not everyone is like me, however, I still feel that information is empowering. When a person is empowered with the tools they need to make decisions for themselves and their loved ones then they feel better about any situation no matter how dire the prospects.

So many times I've seen situations where there are regrets because people didn't take steps they could had they had the knowledge that was within their grasp. By facing reality and making even tough decisions, a person (and their loved ones) can navigate a difficult time with a sense of peace that does not come when the decision is made to do or know nothing about your health situation. 

You already know that medicine is an imperfect science, yet some people rely only on information that is generalized by the necessity of that imperfection. Let's take cancer for instance. In any cancer situation, a doctor looks at the type of cancer and does his or her best to match the rest of the health of the patient with what appears (generally) to be a best course of treatment. The fact is that it may or may not work. Now, let's say the cancer doesn't respond as the doctor and patient had hoped. Sometimes whether the doctor recommends a chance in course or the patient does, it's necessary. If a patient and their loved ones don't know what's going on, they can't make decisions or be their own health care advocate.

Now, worst case scenario. No treatment seems to be working. The patient wants to stop treatments. The cancer is still there and maybe worse. What's a patient or caregiver to do? Go home and pretend nothing is wrong and struggle through whatever comes along? No. Find out the next prognosis (best idea of what is most likely to come) even if you don't think you like it.

If it means admitting that yes, your earthly life (or the life of a loved one) is coming to an end, then even that knowledge is empowering. A vast majority of people do not have a choice in how they spend their last days, weeks, or months of life. But this patient does. That's power. It's power to find space for the bucket list items, it's power to reconnect to family members and say what needs to be said, and it's a time to prepare the way for them so that they don't have to manage the business of death by themselves. By handling things like updating wills and all that "getting your affairs in order" entails, you leave your loved ones a gift. They know that they are following YOUR wishes, which brings peace and comfort when you aren't there offer that to them. Isn't that better than knowing inside your heart that the end is coming and doing nothing about it? Many people feel better if they're taking action rather than letting things happen to them. So instead of focusing on the dying, focus on what you can still do to make a difference. Doing so may help reduce some of your own fears about the dying process.
Is this what anyone wants to do? No, of course not. But truly, dealing with any information is all in how you look at it. Some make look at a poor prognosis as a 'death sentence.' I encourage you to look at it as a 'how to spend the rest of your life' sentence.

So if you (or a loved one) have received the news that their health outlook is not good and perhaps life is drawing to a close, here is a list of things to look at and address with those you love.

  • Is my will, healthcare power of attorney (proxy), DNR (do not resuscitate), and durable power of attorney in order? 
  • Have you asked about hospice care - either in your home or at a 'hospice house?' 
  • Do the people I care about know where I want my last days spent? (its okay to change your perspective on this as time goes on)
  • Have I said all the things I need/want to say to my loved ones?
  • Have I given or planned for the distribution of my personal belongings the way I wish? (sometimes a will does not cover personal items you may really want to go to a particular person - a car, jewelry, photo albums, and special personal collections) Along these lines, consider giving those items away now, while you can see the joy they bring to your loved ones.
  • Have I told my spouse and children, what kind of funeral I'd like? Remember that funerals and memorial services are for the living. If they feel they have done right by you, then they will offer peace and comfort, rather than add a burden of guessing the answers for how to plan. 

Lastly, what if you haven't gotten a prognosis of life coming to an end? Why are you waiting to get one? Working through the list above is empowering at any stage of life... its information, and it's empowering.


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