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.

Wednesday, February 15, 2012

What You Learn Makes a Difference - for the Caregiver and the Patient

Information doesn't have to be digital to be helpful!
What are you learning? Have you or your loved one faced a health challenge by pretending it doesn’t exist? We all know someone who has. How are you educating yourself about your needs? The fast pace of medical advances challenges us, the consumers of medical care, to educate ourselves. Learn about your condition and ask that doctor questions. No matter what stage of life you are in, the better you understand your own body, the better you and your doctor can create a winning team to avert medical crises and maintain good health.

Gone are the days when anyone should get away with having the Dr-God mentality. Do we want our physicians to have all the answers, sure. But it's just not a reasonable way to approach healthcare anymore when we have so many resources available to us. Every person and every body is unique.  By matching your body and its needs to information available, healthcare becomes more proactive then reactive.  

If you or a loved one area dealing with a health crisis, arm yourself with information. Does the thought of Google-ing the dozen lettered diagnosis your doctor's just dropped in your lap make you want to run and hide? You're not alone, but if you let your fears overtake you, you're losing out. Some doctors discourage internet use with concern that their patients will not interpret the information they receive accurately, increasing fears. But if what you learn empowers you to ask questions, and you get answers and a better perspective on your care. That also inspires more confidence in what your doctor recommends, then everyone wins. Some doctors encourage internet use, knowing that if a patient takes time to educate himself or herself when they are ready and aren't just relying on what can be learned during an office visit.

Not secure with Internet search engines? There are medical libraries in many hospitals with librarians who will help you find more information. Community libraries are also a good start. The key is to get some information and start processing what you learn.  

I'll give you some tips for gaining information and support from others, such as in support groups, in a future post, but for now, I want to encourage you to seek information. Read any information the doctors give you about your condition and let them know how that information sits with you. There are so many things that your doctor doesn't and can't know about you and there is the gap that only you, an empowered patient or caregiver, can fill.

For example:  You have been diagnosed with cancer and have started chemotherapy. Dehydration is a concern and it's listed in the drug information sheets you're handed by the infusion nurse. If you read about the possible side effects, like dehydration, you can recognize the symptoms before they land you in the hospital. Take that one step further. Instead of just assuming you need to drink more water, you talk to the doctor about what other things you can do to help prevent dehydration. Gatorade?  What if you don't like it?  Are there other options? Ah, the doctor mentions that melons are great for not only getting necessary fluids but also in balancing electrolytes? Electro whats? It's okay if you don't know all the terminology. What does matter is that you're discussing a proactive approach to maintaining your
overall health instead of reacting to something that can be prevented.
Oh, melons - Watermelon? Love it? You know to stock up before your next round and plan some fun snacks. You're taking charge of what you can. You can't make the cancer go away on your own, or predict your body's reaction to chemo, but you can be armed with information to make choices that make a difference.

Once you start learning about your condition, share what you're learning and your response to the information with your loved ones who care. Sometimes they don't know when or how to talk with you about what you're going through or what your caree is going through but they want to. Sharing what you've learned opens the door to bonding and building a support network for your specific needs.