Thursday, October 13, 2011

End of Life Care: To Feed or not to Feed?

"Medical science is called on to eradicate the illnesses from which we suffer; it is not called on to eradicate the patients who suffer the illnesses." --The National Catholic Bioethics Center

I have posted previously about end of life care issues and one entry, End of Life Care Decisions: More Gray than Black and White, remains one of my most popular entries to date.  People charged with making decisions for a loved one nearing the end of earthly life are searching anywhere and everywhere for answers.  The internet is loaded with so many sites and articles and it is very difficult to find definitive answers to match individual situations.  Many links that show up in an online search go directly against people the values of people who cherish all life from natural conception until natural death.  There are other sites which give basic Church teachings but don't break it down into information a caregiver can absorb and use in his or her own situation.  When you are in the middle of a crisis involving a very ill family member, you are not interested in theological views on life throughout history.  You need answers and guidance, and you need them now!  There is one website, operated by The National Catholic Bioethics Center in Philadelphia, which I have found to be the most clear and concise.  First, a case to illustrate a point:

My grandmother was recently admitted to the hospital following a very bad chest cold which developed into pneumonia.  Her regular doctor was out of the country for a couple of weeks and the doctor who was covering while he was away simply ignored repeated requests by nursing staff and family members to examine her over a two day period.  My mother and an aunt were spending time with my grandmother and it was clear her health had diminished.  She was difficult to awaken and it seemed she had difficulty breathing.  The nurse called for the ambulance and she was admitted to the ICU that evening.  She was severely dehydrated, tests indicated a UTI and the pneumonia.  I went to visit her the next morning and she opened her eyes and responded to my voice.  I asked if she wanted a drink and she said she did.  She proceeded to drink four ounces of apple juice, an ounce or so of milk and asked for some Pepsi.  Her blood pressure was very unstable and we had difficulty keeping her warm.  The following day she ate a bit of tomato soup and had a few more drinks and appeared to be improving thanks to good medical care, intravenous fluids and antibiotics.

A day or two later (they all blend together when you and your family spend so much time at the hospital) they moved her out of ICU and into a regular room and she was beginning to become more alert.  For anyone who has spent time with a dementia patient, this is a good thing and can also be a big challenge as well.  She became more animated and was very anxious with unfamiliar surroundings.  We asked if they could give her any anti-anxiety medications and they did.  She calmed within 15 mins and family left the bedside as she settled in for sleep at night.  The next day, clearly due to the medication she was given the night before, she was completely unresponsive.  I have no idea how much they gave her, but I can assure you whenever she has been given anti-anxiety meds before, this was not the result.  Her eyes were tightly closed and I could not rise a response out of her and others tried off and on throughout the entire day.  We left her bedside at night hoping that the morning would present a different level of alertness.  The following morning, she was still unresponsive for the most part and we noticed a sign on the door stating that the patient was NPO, or was to receive nothing by mouth.  We asked the nurse the reason behind the order and she said that it was because she had choked on a drink and was unable to swallow.  Unable to swallow?  They had her on NPO until she could be evaluated by a speech pathologist.  Since we wanted the doctor from the nursing home to have no involvement in her health decisions and care, she was treated by the on-call doctor - and their were at least a few over the period of a week.  The contact with a physician went from every day for the first few days to not a word even when a nurse was asked to page a doctor.  My mother and I noted that the antibiotics appeared to be all gone and she was only receiving a very slow drip of IV fluids.  When my mother returned later in the evening, not only were the antibiotics gone, but the last of the IV fluid was gone in the bag.  She summoned a nurse who brought her meds and a cup of water and my mother stopped her showing her the NPO order clearly posted on the door.  And oops, the IV fluids and antibiotics should have been administered several hours before.  Dry mouth, no fluids and no food by mouth.  But word was her lungs were sounding much better!

While my aunt was with my grandmother the following day, a speech pathologist came into evaluate her swallowing.  She indeed had difficulty swallowing and choked on a drink they offered her.  By this time, the IV fluids have been withdrawn (without a clear explanation from medical staff), no doctor could be found though family members had asked and still the NPO order clipped to her door.  She was still very groggy from the meds administered a couple days prior and a grim scenario was unfolding.  They gave her a couple of units of blood due to severe anemia, and we were told she would probably be going back to the nursing home in a day or so.  Her lungs were sounding much better, blood pressure stabilized, all blood tests indicated normal levels and we were all left staring at each other in disbelief.  NPO but no mention of the dreaded topic: a feeding tube.  My mother and her sisters were clearly stretched to a very dark corner of more questions than answers, and no doctor to advise us.  I had a discussion over the phone with my mother and she raised a question which has become common place today, "But what about her quality of life? If she can't eat or drink, do we want her to have a feeding tube?  Do we want to put her through that?"  Knowing that she loved my grandmother and only wanted the very best for her, I reminded her that if that was her grandson in the bed and all of his systems were functioning properly but for whatever reason he was unable to swallow, she would be right there demanding that he be fed by any means possible.  Her life is a life - no more or less important than the life of one of her great-grandchildren.  That was just yesterday.

Knowing that today would be decision day, my mother was the first to go to the hospital this morning.  She called me and left a panicked message telling me that when she got there, my grandmother was already moved back to the nursing home.  I raced over to the nursing home and sure enough, there was my dear grandmother back in her bed at the nursing home.  Her eyes were wide open and when I came into view she saw me and said, "Oh hi!"as if it had been a very long time since we had last seen one another.  A very sweet aide was feeding her some pureed peaches and mashed potatoes and gravy.  Yes, NPO my foot.  Half of the mashed potatoes were gone (her first solids in over a week) and she was also drinking a thickened nutritional beverage.  She said she didn't want any more food and I kept eyeing the mug of water next to her bedside table with the straw in it.  I knew she had to be parched beyond belief.  I knew she would be able to swallow just fine and was waiting to make my move.  NPO could just take a bus to hades for all I cared.  Just then, her social worker walked into the room.

A very nice lady, M. has been a very valuable asset to my grandmother and all of us.  She tells you like it is and keeps communication lines open.  She has gone to bat more than once for us on behalf of my grandmother and I felt like a bit of light entered the room.  She said they knew last night she was coming back to the nursing home and they told her "the family refused a feeding tube" and she needed to set up a meeting with family to "set up comfort care" for my grandmother.  WHAT?!  We explained that there had been no such conversation, and seeing that I am her healthcare proxy and my mother is the secondary proxy, there was going to be no such order for comfort care.  Thankfully, M. was relieved and said she wasn't ready just yet to put her into comfort care either.  M. bent over closely to welcome my grandmother back and Grandma was clearly happy to see another familiar face.  M. asked if she would like a drink and went off to retrieve some thickened juice for her.  I decided to make my move and asked Grandma if she would like some ice water - her eyes widened and she said, "Oh, yes!"  I offered her the straw and she sucked on that plastic tube with vigor!  I pulled the straw out briefly to make sure it was going down and she said, "It's so cold!"  I asked if she wanted more and she said, "Please!"  The social worker came back into the room and I told her that the water had made a big impression.  Then she offered my grandmother the juice and she drank all of that.  Grandma said she wanted some more juice, so when the social worker left the room, I offered her more water which she drank as though she had finally emerged from the Sahara.

We met with the administrator of the nursing home and will be meeting with the social worker and supervisors of entire care team Monday morning to clear up any of the 'gray' areas and have a clear plan put in place.  Again.


I found this excellent guideline for hydration and nutrition.  Please bookmark it, print it, share it and if you are a Priest, please have copies of this available for your parishioners.  Medical 'professionals' cannot continue to get away with starving and dehydrating human beings who they decide to not have a proper quality of life. Our loved ones cannot speak for themselves and it is left to us to fight for them just as they would fight for us if the situation were reversed.  What about people who have no family nearby?  Is it a good idea to handle medical decisions over long-distance phone calls?  Here are some bullet points from the linked article:
  • We should provide food and water, even by artificial means, to all who are in need of them and can physiologically benefit from them.
  • The more burdensome to the patient a particular intervention, the less likely it is to be morally obligatory. 
  • The provision of nutrition and hydration by artificial means does not differ in its moral dimension from the provision of food and water by fork and cup. Both constitute ordinary means of preserving life.
  • If death is imminent, the provision of artificial nutrition and hydration is not necessary. Death will follow from the underlying disease. 
  • We need not undertake any medical procedures that will extend this life beyond its appropriate boundaries, but neither should we take any steps to shorten life out of exaggerated fears or misplaced concerns.
UPDATE: October 24, 2011

We met with the care team at the nursing home which included the social worker, an administrator in charge of nursing, the medical director (and my grandmother's personal physician for over 30 years) and the dietician.  The doctor had just returned the previous day from a trip out of the country and had yet to read the hospital reports.  He read much of them aloud at the meeting which filled in some missing pieces.  The report indicated that my grandmother suffered from severe protein malnutrition at the time of her admission, anemia, dehydration and pneumonia due to aspiration.  Anemia has been a constant battle for my grandmother since she had young children and the lack of protein was no mystery either.  She had reached the point of less frequent bouts of alertness at meal times and quite often the protein offered to her was of no interest.  She would drink nutritional supplement drinks, but since she had a very bad cold it was difficult to get her to eat or drink much of anything.  She had also started to forget to chew properly and swallow.  This is what most likely led to the aspiration.

The blood tests all indicated that my grandmother's systems were functioning fine for a 90 year old lady and her greatest difficulty was the struggles with dementia.  We agreed that pureed food would be best for her at this stage and that she neither seemed to mind a change in the texture nor the appearance.  It was also noted that in between meals non-thickened beverages were fine as she did not appear to have difficulty with them.  With meals, they suggested that thickened beverages were best so that the consistency would remain the same for all food items offered to her.  They were going to provide her with oxygen as needed and offer nebulizer treatments (which strangely had taken place even when she was in much better shape a couple of years ago but somehow were discontinued) as she had been diagnosed with COPD years ago.  The doctor assured us that she will again, at some point, aspirate food again and wanted to know what extreme measures we wanted for my grandmother.  He mentioned 'comfortable' and 'comfort' which threw up red flags for me.  Doctors and loved ones do not share the same meanings of seemingly simple words.  Having learned the hard way that in order to secure the care your loved one deserves you need to put all of the details on the table, I told the doctor succinctly, "We do not want to starve or dehydrate my grandmother to death simply because here brain is not functioning properly." I think my frankness had unsettled him, but I needed to be clear.

The matters of the doctor who failed to treat my grandmother prior to admission and the hospital telling the nursing home social worker that the family refused a feeding tube and were seeking comfort care directives are both being looked at.  The former is being investigated by the administrator at the nursing home and she has promised a report in two weeks after speaking to all parties involved and consulting records.  An entry on the physician assignment list with my grandmother's name had been crossed out which is something that is actually illegal to do on such a document.  We are not sure what, if anything, there really is to do about the latter situation.  Our culture clearly extends life in certain situations a thorn bush instead of a loving hand.  If you have any comments, suggestions, insights, questions - and especially if you have found yourself in a similar situation - please leave a comment.


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