28th Jun 2013
Hattie, my wife’s grandmother, from her hospital bed begged me to kill her. I didn’t. I did ask a lot of questions and found out she was laying on a broken hip. She got the proper treatment and medication. Later she said, “thank you” for ignoring her request. The time she spent later enjoying her family and grandchildren was precious.
We all will be faced with making end of life decisions for our loved ones. This is perhaps the most difficult decision you will ever make. Because it is a hard decision we often try not to think about it. Think about it anyway, and think about it now. Otherwise you will be suddenly confronted with the need to think through a wide range of confusing facts while experiencing the most intense of emotions. Here are some important steps in the process.
Step one is to have a family talk. Your Dad might say, “I would never want to be hooked up to a bunch of tubes.” Of course, who does? When someone is talking about tubes they are usually thinking about artificial ventilation, or a feeding tube. A feeding tube is not extraordinary medical care, as it is just providing needed food and water. A breathing machine is extraordinary and you are never under an obligation to use one. They are used when a patient is in a temporary weak condition and a little assistance will get them over the hump. When you are talking to you Dad, ask him about this situation. What if he just needed a little assistance when he is weak? Would he allow a few tubes in that situation? Would he really like to spend some quality days with his grandchildren after he recovers? The answer would always be, “yes”, even if he had some temporary discomfort of “tubes”. While it is important to think through the process in advance, don’t try to make all the decisions in advance. Talk and think about the issues so when the time comes you will know the questions to ask.
Step two: make sure your loved one has a durable power of attorney for health care decisions. This is a written document in which an adult authorizes someone, an agent, to make health care decisions for the adult. A durable health care power of attorney can be effective any time the person is unable to make or communicate a decision.
Step three is to stay involved should your loved one have to go in the hospital. This is vitally important. Your loved one will always get better care if the family is involved. Many hospitals now use a hospital list doctor for long term chronic patients. This means the doctor will change in rotation every few days. So it is hard to maintain real continuity of care. You understand the “patient” and you can help with communication. You can ask questions. You can and should ask for medical intervention when needed. You love the patient, and that makes all the difference.
Step four: talk to the professionals. In end of life situations most hospitals have a palliative care nurse or social worker who will engage you and the family in discussions. Most are very helpful and will answer all your questions. You will never know, however, if they share your values. What you do know is that they do not know the patient the way you do. Don’t default to this stranger making all the decisions, and most of these professionals will tell you just that. You need to ask enough specific questions to allow you to make this critical decision if you hold the durable power of attorney. What is the patient’s condition? What do these words mean in plain English? Is this condition in and of itself causing the patient to die? Is the patient is in the process of dying? Are body systems closing down? Don’t ask if the patient is terminal; we are all terminal at some point. The question to ask is, “Are any of these conditions terminal right now or is the patient in a chronic, severe condition”?
Step five: talk to everyone involved. Get as much input as you can and be sure to talk to the immediate family. There should be no surprises to anyone involved. While this is not necessarily a group decision, this is not a decision to be made in a closet.
Step six is prayer. God has been through this process more often than you. Pray for wisdom.
Step seven is to keep the critical issue in focus. Take for example the question of when should extraordinary measures be withdrawn from the patient? You do not have an obligation to use extraordinary medical care to prolong death. The key issue in making this decision is simply this: while we have no obligation to prolong the death process, we should not make any decision that causes death. Are we preserving life of one who is temporarily weak or prolonging death? Even though at the time we will have strong emotions, if we keep this key issue in mind, you can be confident of making the right decision.
Allow me to illustrate using the issue of food and water. All people are entitled to food and water. If someone is weak we are to provide food and water, and other assistance they need to recovery. We do not withhold this food and water just because they are weak. We do not withhold this assistance just because they are weak for a long time. You do not withhold this assistance just because you are tired and emotionally drained. You do not withhold this assistance because you can’t stand this any longer. This is not about you. If they are weak, and a little assistance will get them over the hump, then we provide that assistance. Food and water is not medical treatment, although some professional now claim it is. Food and water is ordinary care and this does not change just because the elderly is now weak. This does not change just because they are getting the food and water by a tube. It does not change just because they call it hydration and nutrition. However if the body is shutting down too much hydration will not be helpful. The medical providers know the appropriate amount.
Should we stop their suffering? Sure, but not by taking action that will end their life. Medical care is advanced enough that most of the time appropriate amount of pain medication will go a long way in eliminating suffering. Taking a life doesn’t end suffering, it inflicts suffering. You do have to watch the amount of pain medication, too much will actually induce death.
You will have to sort through the often complicated medical facts in order to make the needed decisions. True, the emotions are difficult and it will be hard to think. But with a little forethought you can be confident and equipped to deal with this tough area.