LIFE OR DEATH HEALTH DECISIONS

            Recently Beverly had two seizures on the same day; both mild; it had been more than a year since a seizure.  This resulted in increasing her dose of anti-seizure medication back to the full treatment level.  And then she had another urinary tract infection (UTI).  This pushed me into thinking again about the issue of when, what & how to treat.  Decisions about treatment can now be life or death in their consequences.  The complexity of decisions about treatment grow more troubling when advanced dementia is involved. That is because the decision is not made by the person needing treatment but by another with medical power of attorney, most often a spouse or a child of the patient.  In Beverly’s case, I am the one!  With medical power of attorney. 

            No doubt some will think medical treatment decisions are simple:  treat any illness, because maintaining life is an overriding principle.  Modern medicine is largely on that side.  That is decidedly NOT my view.  Maybe it is helpful for each of you to imagine yourself as an advanced dementia patient.  In that state, you are no longer able to do anything for yourself.  But even worse, you no longer think sensibly or plan even the simplest activity; you have very limited communication with other people.  And you are now mostly unconscious or, at best, semi-conscious.  And this condition is irreversible and becoming worse.  Think now about how long you would want to be in such a condition as a means of understanding the issue of treatment.

            Beverly expressed her wishes in the early stage of her Alzheimer’s.  On the formal Utah Advance Directive, she was as clear as that document allows.  Under any of several conditions, she would not want feeding tubes, IV feeding, resuscitation, etc.  Quotations below are directly from the Utah Advance Directive form.   

In the form Option 1 gives the person with medical power of attorney the power to give or withhold treatment without any constraints.  NOT CHOSEN

            Option 2. “I choose to prolong life.  Regardless of my condition or prognosis, I want my health care team to try to prolong life as long as possible within the limits of generally accepted health care standards.”  NOT CHOSEN

            Option 3 provides for the termination of treatment (specified later) under any of the conditions listed on the form; any one of those checked by the person allows for termination of treatment: 

 “My health care provider should withhold or withdraw life-sustaining care if at least one of the initialed conditions is met:

I have a progressive illness that will cause death

I am close to death and am unlikely to recover

I cannot communicate and it is unlikely my condition will improve

I do not recognize my friends or family and it is unlikely that my condition will improve

I am in a persistent vegetative state”

Beverly selected Option 3 and checked/initialed all these conditions.  Each seems specific enough until there is a decision about whether they in fact apply to exactly now.  (I signed my own form with the same set of choices that she made.)  

A few years after we completed these forms, and with her Alzheimer’s somewhat more advanced, I prompted her to talk about the issue again.  I asked her if she would want to make a video of what her wishes were, as a record with more clarity.  Her response, shocking to me at the time, was: “You just want to kill me.”  Clearly the dementia had advanced to the irrationality that was characteristic in many other ways.  After this outburst, I struggled with trying to explain what I was intending, to no avail.  My continued talk about what I wanted to accomplish was futile!  As I eventually learned about troubling interactions over one thing or another,  it is best to leave the subject behind and simply wait for her to no longer remember the matter.  Of course, “never bring it up again” is certainly a wise component of dealing with such reactions.

            Still she had made it clear, early in the Alzheimer’s journey to me and to our children that she would notwant to live for a long time with no more sensibility, failed knowledge of us and others, unconsciousness, etc.  Our children have a clear recollection of a specific day that Beverly & I were with them for lunch.  And she said, “I don’t want to be like that,” referring to living in the late stages of dementia, as she is now.  I understood well what she wanted, yet the domain of limited functioning does not have clear boundaries.  When does she reach that point?  Right now, I am clear that she recognizes me, largely by voice and from the announcement by others that “David is here to see you.”  Erik, our son, believes that she recognizes his voice.  Lori, our daughter, does not believe she recognizes her any more.  And all others who have discussed the issue with me report that she no longer recognizes them.

            The ultimate question is:  What would she want now, for this particular urinary tract infection or potential seizure or other condition?  Would she want to live like this and still receive treatment for the various medical issues she continues to deal with?  She would want treatment to prevent suffering.    Through most of her time in this facility, she was able to walk the halls & greatly enjoyed moving about.  That allowed her to be involved with others.  She carried out her Nursing practice, offering kindness, touch, and reassurance to all, including patients, their families, and staff.  She regularly offered to assist Nurses with their responsibilities, including help with giving medication to the sometimes reluctant, especially so when there was a waiting line at the Nurse’s station.  Her happiness was contagious, as she was generally smiling, even laughing, and often with something humorous to say.  She could still play a piano or her keyboard.  And she sang along with visiting entertainers, creating great harmony lines to the singer’s melody.  

All of that has generally disappeared.  She is now full time in a wheelchair and she is unable to move on her own.  She no longer initiates interaction with others, though she responds with others who initiate. Music engages her, but mostly her response now is restricted to moving legs and feet in rhythm.  Sometimes, when I play and sing for her, she will sing small sections of the melody.  Still, though, music is significant.  Considering all, she seems somewhat happy in her care facility, which provides social interaction and pleasant activities, especially music.  What would she want now for her UTI or her seizures, given her situation now?  She could not possibly tell me, not even understand the question.  What would you tell your family you would want?  And would that change as dementia progressed?

            When is the point of NOT treating medical issues, as her dementia continues to make her less functional?  Reaching an answer is agonizing, elusive, and subject to vacillation!!  My love for her continues, but it is complex to balance that against what she wants/what is best for her now.  And there are times when I want this to be over! 

            Medical practitioners (such as her physician Dr. Fehlauer) are tuned into certain aspects of symptoms that suggest the approaching end of life:

a)     Eating and drinking difficulties, particularly involving swallowing and choking. {She is only provided pureed food which is typically fed to her by a CAN or other staff person.}

b)    Severe infections no longer treatable, such as UTIs or respiratory illness. {UTIs are more common now for her.)

c)     Frequent visits hospital, ER, Instacare, etc. often related to falls, heart disease, stroke.  {She has had more than ordinary, but none of late; the facility avoids hospital visits if at all possible.}

Currently she is not close to the end of life.

            Further, what and how is anything to be treated?  As to seizure treatment, the physician and I previously reached an agreement more than once that she should continue to receive anti-seizure medication, but at a lower dose than the “normal” full dose. The full dose keeps her so sedated that she has very limited connection to others.  Treatment of UTIs is also not simple.  Others caregivers have decided to no longer treat these, even with oral antibiotics.  Any pain would be treated, of course.  Will her body “clear” the disease on its own?  Possibly.  And antibiotics can create other consequences.  Still the UTI may result in death.  Is it time to NOT treat UTIs?

            The Utah advance directive form states that the designated person may make decisions about these interventions, predicated on the above-listed interventions:

            “Consent to refuse or withdraw any health care. This may include care to prolong my life such as food and fluids by tube, use of antibiotics, CPR (cardiopulmonary resuscitation), and dialysis, and mental health care, such as convulsive therapy and psychoactive medications.”.

            When and how would we treat other diseases?  Decisions would not always be simple.  Earlier (around 3 years ago) she had a bad fall; this was apparently caused by her first seizure and she fell straight backwards hitting her head on a carpeted floor.  There was a video of the fall from a hall camera.  In the ER, there was evidence of some bleeding in the brain.  The ER physician asked if I would authorize surgery and I could not immediately answer.  After consulting with other medical people, the answer I would give is:  She should have relief of pressure if there was extensive bleeding (basically drilling a hole) but not surgery in the usual sense.

            She has been treated for several issues before and during her stay at this facility.  Prior to that, her fall in our house was treated—for the wounds to her face and injury to her knee cap.  She was treated for an intestinal issue that was painful.  And the Physician and Nurses continue to deal with bowel issues, bouncing between the two unpleasant extremes.  And UTIs have been treated a number of times. Plus she was treated for a finger accidentally smashed in a door at the facility.  And she has received all authorized COVID shots and boosters.  I cannot specifically state what would not be treated.  But certainly not anything involving surgery now and no IVs or feeding tubes.          

            The fundamental requirement late in dementia is to provide treatment that is “comfort,” essentially avoiding pain or other forms of discomfort.  This is an essential element with hospice treatment as well.  Do not continue to treat the cancer, heart disease or other illness.  Only keep the patient comfortable.  Her physician and I have agreed that should always be a fundamental principle of treatment for her.

With this recent round of difficulties, I discussed my need to make the best decisions with our two children, her brother, a close friend of hers, and her physician. One suggestion was to not treat the UTI and, if the result is death, maybe that is best.  Still I decided to treat it this time.  My discussion with these and with others was that, each time there is a decision to be made I would now need to be deliberate.  It would be based on what I thought she would want and what is in her best interest, given her condition from Alzheimer’s.  I would, if at all possible, consult with each of them.  And obviously with the physician.  And always comfort would be important. 

            Finally note, as my daughter thought out for me, it is not that there is a one-time decision about medical care.  As Beverly’s recent medical treatments described show us, there is an ongoing series of decisions.  Each one may be lifesaving or not.  And then another comes.  Would she want the sequence of decisions to keep saving her life?  Or would she really prefer an exit from the extremely limited functioning she has now?