When writing about retirement issues, my mantra is “make a plan.” Usually I am referring to how you will spend your happy, carefree retirement days, but in the past few months I have seen several news reports on the subject of end of life care. This also requires a plan.
While everyone talks about “comfort” as if we all had the same definition of the term, a peaceful death is not easy to achieve. There are so many drugs, new kinds of surgeries and other interventions that the medical professionals may want to try that unless you have been specific about what you want or don’t want, your final days could be filled with unwanted interventions, hospitals stays and drugs.
Surveys say that most patients want to die at home, surrounded by loved ones and without pain, but the reality is that the majority die in hospitals, connected to machines, often so medicated they cannot speak or respond.
In a profession that is devoted to keeping people alive, the patient’s wishes are often overlooked or ignored by the medical personnel. So what can we do to ensure we get the care and comfort we want at the end of our lives? First, choose an “agent” who will agree to honor your wishes, even if it is not what he or she would have chosen. That person will have to be strong enough to speak on your behalf, even if family members or doctors disagree.
Of course, the optimal time to make these decisions is when you are still healthy and of sound mind. There are no wrong or right decisions about medical care at the end of life, but the ideal approach is to have made the choices before one is ill or in the hospital. The best choices are ones that fit your needs and wishes and offer the least amount of suffering.
Before you prepare your own health care directive, learn about the various life sustaining treatments from breathing machines to hospice care. Decide which ones you want or would not want. Share your wishes with your family. Each state has its own form and you can include special requests such as organ donation or type of burial. And once the form is completed, discuss it with your family, your designated ‘agent’ and your physician. You don’t need a lawyer but some states require you have a witness sign the document.
Sharing your thoughts and decisions with your family will do two things; it will help them to know what your wishes are, and will ease their own grieving. And even after you have written your directive, you may want to reassess. You created the directive when you were healthy and optimistic and before there was a crisis. If your circumstances change, so may your wishes.
Talk to your health care providers about your decisions. Are there treatments or procedures that you may not know about that would be helpful? How does he or she feel about pain management? Will they follow your directive? Will they help you find palliative care specialists if you need one? Will they be honest with you if certain treatments stop working?
It is quite important that you have these conversations with both your medical team and your family. The reason is that that even if you have personally discussed your wishes with the physicians, the law does not require them to follow your directive if they disagree and think they can prolong your life. Two nurses I know confirmed this finding; doctors often ignore the whole patient if they think they can fix a specific problem. In a way, this sounds like a good idea, but many patients don’t want ventilators or feeding tubes at the end of their lives.
Finally, if you think your loved ones will object to your decisions, explain why you made them and ask if they will respect your needs, even if they differ from yours. Ask them if they will advocate for you, even if it is not the choice they would make. No one wants to think about these things, especially when one is healthy and full of life, but communicating your wishes is important for both you and your loved ones.
www.caringinfo.org can be very helpful in explaining these issues further and in providing state-specific advance directive forms. You can also reach their help line at 800 658 8898.