The Death of Our Father - What We Learned

As the executor named in my father's will, I thought we were covered in regard to Dad's death.  I was wrong.  In hope that it might help others to be better prepared, we share these thoughts:

1.   Have an up-to-date will in place.  (Dad has this; he had updated his will just a year and a half ago after moving from Florida to Georgia.  Laws vary by state, so if your loved one moves, please check with an attorney.)

2.   Have a medical power of attorney in place.  (Dad had this.  It placed the power in the hands of all four children, and it required a unanimous vote of the four before anything could be done.  When Dad was in ICU, I rushed to pull this from the files, and I hadn't paid any attention to the unanimous vote.  I thought the concept was terrible at first, but I quickly came to realize that this requirement protected Dad and me.)

3.   Have a Living Will in place.  (Dad had this.  I thought this was the little bit of magic that would eliminate any tough decisions in the hospital  BOY WAS I WRONG!  A Living Will is an end point, not a starting point.  Most Living Wills only address the most extreme circumstances.)

4.   Have a clear understanding of what your loved one wants to do or not do in various situations.  We did not have this because we thought the Living Will was magic.  We were fortunate that Dad became totally lucid (or at least we believe he did) after 30 days in the hospital and ICU, so we were able to ask if he wanted a breathing tube inserted in his trachea and a feeding tube inserted in his stomach.  He said he did not want them.  We never told him that the four children had voted unanimously against these -- believing it was what he would have wanted.  My wife and I will now spell out in writing what each of us does and does not want under various conditions and at various ages.  Basically, neither of us wants any form of tube for very long unless the doctors anticipate a significant recovery and no permanent tubes.  I am going to want a whole lot less at 89 than I want at 59.

5.   Have a primary care physician that your loved one knows and has confidence in.  (Dad did not have this, and this was a significant problem for us.  Dad did not like the primary care physician that we found closest to his home in Georgia; the doctor was an Indian or Pakistani, and Dad could not understand a word he said.  So, he was in the process of changing when he became ill.  As a result, he had no one to manage the medical process in the hospital.  We dealt directly with pulmonologists, cardiologists, and neurologists, and we did not have the benefit of anyone to interpret for us or go to bat for us.)

6.  Always get a second opinion - even in the hospital or ICU.  Doctors make mistakes A LOT.  Our mother died prematurely because four doctors made serious, serious mistakes.  We dealt with a group of five pulmonologists, and we found that two of the five seemed to feel Dad had a chance of getting better while the other three were always advising that he could not.

7.   If you don't have confidence in a doctor, replace him or her.  Doctors make mistakes A LOT.  Find someone you trust, and try to find someone who seems to care.

8.   ALWAYS have someone in the hospital, ICU, and hospice to be there for your loved one and to be there when things happen that the nurses or doctors may miss.  There were at least four instances in the hospital when we identified problems that it might have taken hours for the nurses to identify.  In two cases, the respirator malfunctioned, and we were the ones to identify it because we were in the room 24/7 and we knew how it operated better than the nurses!

9.   Monitor what happens in the hospital.  Keep notes.  Write down the name of every nurse and doctor as they are on duty or visit.  We kept a log of shift changes, vital sign readings, observations of how dad was doing, what he said when he was lucid, etc.  This information proved to be extremely helpful with nurses and doctors on many occasions.

10.   Attempt to obtain continuity of care from the nursing staff.  Ask to meet the Charge Nurses when in the hospital and the Supervising Nurses when in the ICU.  We also met with the director of the ICU.  I believe that if you let these people know that your family is going to be actively there, then your loved one will get better care.  Ask these managers to give your loved ones the same nurses so there isn't someone new to be "trained" on what's important with your loved one.  We had a shocking number of ICU nurses with virtually no continuity until we made an issue of it.

11.   When you identify bad nurses, ask that they not be used for your loved one.  Dad had perhaps 50 different nurses in 49 days in the hospital.  The vast majority were not caring or compassionate.  There were two who were so insensitive, rude, and uncaring that I insisted that they no longer be allowed anywhere near Dad.  We made sure that we sang the praises of the really good nurses -- Lisa, Brooke, Diane, Rita, Adele, and Donna.

12.   Understand what a hospice is before you plan to use one.  Dad's pulmonologists advised us to take Dad to a hospice, so we did.  We didn't have any experience with a hospice.  The people at the hospice were very nice, and it was as pleasant as it could be...but a hospice simply works to make death more comfortable.  Our advice would be do not go to a hospice until or unless you have more than one opinion that your loved one's death is imminent.

13.   Have a legal power of attorney in place.  (Dad had this, but it was Florida, and I wish we had done one in Georgia just to have something really current and based on local law.)

14.   Consider giving the executor signing privileges on your bank accounts.  It seems like this would simplify a few things.

15.   Have all of the funeral arrangements made, and have it all paid for.  Dad wanted me to make all of the arrangements years ago, and I didn't like the idea of even thinking about him ever dying.  So, my sister got to deal with choosing a funeral home, buying a casket, etc.  It would be far better to have long since dealt with all of that.  It is all a lot more expensive than we expected.  Dad already had his plot, but that's just the beginning.  The executor should probably handle all of this independently, and just inform the other loved ones of dates, times, etc.  State in a letter of direction to your loved ones who will be in charge of the funeral.  Making funeral arrangements "by committee" simply gets loved ones squabbling over one detail after another.

16.   Capture memories from your loved ones.  Dad had done this for us by writing a book and by narrating home movies while converting them to DVDs.  What he has given us is truly priceless.  The easiest way to capture memories, stories, and family history would be to sit your loved ones down and turn on a video camera and ask questions.  I encourage everyone to be sure to take a photograph of every loved once at least once a year.  We have a lot of photos of Dad, but we are amazed that we do not have photos of him with certain key people in his life and at certain family events.

We hope these thoughts will help you with your loved ones or with yourself.