Is there ever a good time to talk about dying? It’s always an uncomfortable topic, even if you are young and vibrant and in the best of health, but everyone aged 18 and older should consider the important decisions about the care they want to receive at the end of their life. Most say they would like to die a quiet, peaceful death at home, but 75% of Americans die in an intensive care unit (ICU), often because they have not made their wishes known.
Many of us have had to make decisions about a loved one’s health care at a time when he or she couldn’t, and if you were not sure of the person’s wishes, it made it even more heart-wrenching. Perhaps even worse is if you are the patient and in a position in which you cannot speak for yourself – in that case, it is the health care personnel who get to decide what treatment you will get.
Unfortunately, what the law says about keeping someone alive does not always align with what the individual person would like. Just because you can be on a machine that will keep you breathing even though your brain no longer functions does not mean it’s the best thing for you, your quality of life, or your loved ones. The good news in all this talk about death is that there are ways to make your wishes known. “Advanced Directives” indicate your particular wishes about whether you want everything possible done for you to keep you alive or not.
What decisions need to be made? If you are terminally ill or should end up in a prolonged unconscious (a.k.a. vegetative) state, there are a few things you might want to think about and plan for so that your dying days can be how you want them to be. One thing to consider is whether you want to have cardiopulmonary resuscitation (CPR) done if your heart stops suddenly. Your heart can stop for many reasons – a heart attack, drowning, electrocution or a severe blow to the chest are just some possibilities. Unlike what makes for great television, the latest evidence shows that only about 11% of people who have CPR performed on them survive long enough to leave the hospital. In other words, their heart might start again, but they may not be able to stay alive without intensive care unit assistance or ever go home to live a normal life.
In a study done at Johns Hopkins University, the majority of physicians surveyed said they would not want CPR done on them if they were in a persistent coma or unconscious state. CPR has the potential to break bones and puncture livers and can be much more disturbing in real life than how it looks on TV. The reality is that your heart might be beating but, if you are still in a coma, a ventilator may be needed to make you breathe and you may need to be hooked to a dialysis machine to clean your blood if your kidneys have stopped working. At some point, the decision will have to be made by a loved one whether to keep using the ventilator (which could go on for years) or to “pull the plug” and end your life. You can make the decision ahead of time if you want CPR or to be “DNR” (Do Not Resuscitate).
Another decision that may have to be made is whether you want a feeding tube sewn into your stomach or passed through your nose into your stomach if you are unconscious and can’t eat. All of these “Advanced Directives” can be spelled out, ahead of time, through a Living Will or a Health Care Proxy. But how do you know what you want? This is a discussion to have with your family members, a trusted friend, and your primary health care provider (your nurse practitioner, physician’s assistant or physician).
One of your options, of course, is to do nothing to prolong your life and just let nature take its course. For example, if you are very close to dying, you may refuse to receive antibiotics to keep you alive a bit longer or a feeding tube, however most people would like pain relief and to be able to make peace with those they will say goodbye to. There are palliative care (similar to hospice) programs that provide those services – not prolonging your life, but keeping you comfortable. Sometimes ICU staff are so caught up in prolonging one’s time on Earth they forget to mention the palliative care alternative, but you or your family can certainly request it. Another option is to indicate that you want to have every possible test, procedure and life-prolonging treatment done in the hope that you will be cured and go home to the life you once knew.
Once you have some ideas of what your options are, there are different ways to make your end-of-life wishes known. One is to have a Living Will. This document allows you to say which treatments you want if you are dying or permanently unconscious. In general, you have the right to refuse care, but if an ambulance is called in the event of an emergency, they are required to attempt resuscitation. Once you’ve arrived at a hospital, it is then that your instructions can be followed. You don’t need to hire a lawyer to do a Living Will, and there are many examples of them online. It is a good idea to give a copy of your Living Will to someone you trust so they are clear about your wishes.
A Health Care Proxy is a person you name to stand in for you to make decisions when you can’t. This person is often a family member, but can be a friend whom you trust, as well. Giving them your Living Will takes the guess work out of making the decisions. However, even if you don’t have a Living Will, they can still guide the medical staff regarding your wishes, based on conversations you have had. There are plenty of resources online to learn more about these options, so do a search and get informed.
Sobering stuff, eh? Even more sobering is having some frightening, painful things done to you that you might not want. Get your Health Care Proxy and/or Living Will together now, and then share them with your health care provider and family. In the end (literally), these decisions should be made by you!