When a loved one is seriously ill, you always hope that know what they would have wanted. In my experience this is a very difficult position to be in. Before Den had his stent surgery, we went over his wishes with the help of a list of questions we found on a website. He made the decision to have his sister as his primary proxy on his healthcare power of attorney and asked me to be secondary. We went so far as to have a meeting with her to go over everything that he had decided. If you have a family member that is of an advanced age, even if they are healthy, I suggest that you go over what they would want if they become unable to make decisions due to illness. There are 4 basic things that you need to know before a person becomes incapacitated and cannot make decisions for themselves.
The biggest question, and hardest to accept sometimes, is do you want to be considered DNR, Do Not Resuscitate. Basically, this means no CPR and no advanced life saving measures. If your heart stops or goes into a non survivable rhythm, nothing will be done. It is very common to have this, Den does, and it takes a big decision off the healthcare proxy. Remember, this need to be on file with your doctor and you also need a copy at home to show the paramedics, if needed.
The second one is DNI, Do Not Intubate. This means no breathing tube or ventilator. This one is a little tricky, especially if you are an organ donor, well both DNR and DNI are questionable if you wish to donate your organs, but your doctor can help you with that. Den has made is clear that he does not want to be on a ventilator, but a mask with positive pressure is fine. So there is some grey area here to get thru and the only way to know is to talk to your loved one.
Next, you need to find out about feeding tubes and IV hydration. Does your loved one want to be kept alive with tube in their nose or a surgically implanted tube that is attached to their stomach? These are used when a person cannot eat and need to be given nutrition. Den had to have a NG (nasal gastric) feeding tube after his LVAD surgery. It is a sticky wicket if you don’t know the persons wishes…do you let them starve to death or keep them alive possibly forever with an artificial feeding method?
Finally, does your loved one want comfort care. Comfort care includes managing shortness of breath; limiting medical testing; providing spiritual and emotional counseling; and giving medication for pain, anxiety, nausea, or bowel problems. This is sometimes called hospice or palliative care. This kind of care can happen in or out of the hospital, depending on the severity of your loved ones illness.
I have found all of my information on the web, so don’t be afraid to look around for more if you think it will help. Some of the good places to start are listed below:
– theconversationproject.org – This site offers a free kit that can help you start the conversation with a loved on about their end of life wishes.
– http://www.compassionandchoices.org – This site has lots of information, forms and links to resources to start the conversation and the paperwork you may need.
– http://www.n4a.org/files/Conversations.pdf – This one is a link to another booklet that is from the National Association for Area Agencies on Aging. The main site has lots of other resources that may be helpful also.
One last thing to remember, if a loved one has a DNR, it is usually void during surgery. I found this out when Den was at having his surgery for the LVAD. His was actually void during surgery and while he was in ICU afterward. Once he was out of ICU, his DNR was in effect again.
So in closing, ask the hard questions of your loved ones, talk to your doctor, be informed of what is happening when a loved one falls seriously ill..this means question the nurses and doctors! Don’t stand by and just…let it happen. Be involved in your and your loved one’s care.
Den's LVAD 