RIP Dad; UN-dear E.R. doctor

sapphoq on life says: To the emergency room physician, no love. Dad indeed was dying when you saw him. He was dead within a week and a half, having gone peacefully and without pain thanks to the hospice that you didn't think he should be in. Hospice is not an easy decision for anyone to make. Dad wanted hospice and he signed himself up for their services. There comes a time in the life of a terminally ill human being that the burden imposed by continued medical treatment is very great. You had a lot of nerve trying to talk me into extending his life and insisting that he needed to be hospitalized for a possible bacterial infection that [as the lab results indicated] it turned out that my father didn't have. That "...do no harm" stuff wasn't written in to the Hippocratic Corpus for kicks. In my unasked for opinion, you are a bastard.



     After the unfortunate e.r. visit talked about in the last blog post, Dad went back to his assisted living facility. The hospice nurse and I struggled to get Dad into my car, then out of my car and into a wheelchair and up the ramp to his home. The emergency room physician who didn't think my dad should be in hospice would have had to sign off that an ambulance was needed to transport him back home.

     Dad spent the rest of that Sunday very weak and unable to stand up, never mind staggering around the house at will. On Monday morning, the hospice nurse noted an increase in congestion in his lungs but no signs of pneumonia. By Wednesday, Dad was very weak and bedridden. He had begun actively to die.

     I sat with him from last Wednesday through Christmas Eve about 8:42 p.m. (with private duty home health aides to fill in about four hours a day so I could have a bit of time off each day). Through Sunday, Dad was able to talk in hoarse whispers. He had long bouts of terminal restlessness. The hospice stopped his regular meds and ordered oral morphine gel and oral Ativan (tm) for pain and anxiety respectively.

     Because of a fluke in the law, the staff at the house are not allowed to administer meds unless the resident/ patient/ Dad was able to take it himself. Consequently, a family member or designee (the hired outside help) had to be there to do so. The house was also experiencing an outbreak of the flu. Although my mother's sister [Mom and Dad had been divorced for many years but Dad and my aunt had gotten very close during his time up here] and several members of my husband's family offered to take shifts with Dad so I could have time off, I was unable to take them up on their generous offers. This year's vaccine was found to be ineffective against this year's strain of the flu.

     I have an opinion. My opinion is that if a hospice patient is in an assisted-living home, the staff ought to be allowed to administer the meds when a hospice patient is no longer able to do so. Period. The law as it stands represented total fricking hardship to me. 

     Dad had the last rites administered on Thursday. When the priest said, "In the name of the Father and the Son and the Holy Spirit," Dad waved his arm across his chest in response. The hospice chaplain came several times during the week, something Dad appreciated. Staff people and residents started trickling in to say their goodbyes to Dad.

     By Sunday evening, Dad responded with facial expressions and bits of hoarse laughter-- if something I said was funny-- rather than with words. He was still able to move his hand away from over mine when he did not want to hold hands.

     By Monday, Dad was too tired to open his eyes. Mottling started up his legs but never did get to his knees. A swollen lymph node popped out on his neck. The house director told him "it is going to be okay" and he shook his head no.

     By Tuesday, there was veritable light show cascading along Dad's body. I watched as arms and chest and neck and face turned gray and white and blotchy in random [to me] sections.

     Christmas Eve Wednesday arrived and Dad was not scheduled to last past the afternoon, according to the best guesstimate of hospice. He did not experience any apnea until the very end. During the last three minutes of his life, he had a bit of apnea, then a few times where he breathed in but not out, a yawn, another breath in but not out, two yawns, two more breaths, and then a huge smile. Another breath in and Dad was done. Dad died holding my hand.

     I opened the window in a bow to an old Polish tradition [and because that seems to help the staff after a patient dies]. Phone calls were made. A hospice nurse came. I was really tired and went home. She called the undertaker and arranged for his corpse to be transferred.

   
     My Dad had Lewy Body Dementia for more than a decade, almost fifteen years. He struggled hard to keep functioning. He worked until he could not possibly work anymore and long past the age of retirement. He was always there for us kids. He never put a time limit on us when we needed him. I was honored to be there for Dad during his last week. Although the past several years presented many difficulties, hardship, and heartbreak for both of us, we also experienced as much joy as we could squeeze out of life. I wouldn't have missed the extra time I had with Dad during the last several years for the world.

PartTwo: How Not to Act for Emergency Room Physicians

I didn't figure that I would have to write a Part 2 but as it turns out, I did have to after all. The only "redeeming" aspect of having to re-visit the subject is that the physician who inspired this piece of writing is not the same physician who inspired Part 1.

1.  Glance at the paperwork which declares patient to be receiving hospice services. Grumble.

2. Order and have completed four tests which involve a C-T scan, an x-ray, bloods, and urinalysis to be completed before family arrives.

3. Ask family if Old Man "has cancer." Tune out short explanation given by knowledgeable family member about the benefits of hospice for Old Man, even though you asked about the benefits. In fact, you admit to not knowing that hospice has a hospice in the same small town that the hospital is located in but hey, that does not matter. Tell family that Old Man "is not dying."

4. Admit to not knowing what Lewy Body Dementia is but tune out the short explanation given by knowledgeable family member [who admittedly is sick and tired of explaining the differences between L.B.D. and Alzheimer's to medical personnel].

5. Push for Old Man to be admitted to hospital as a non-hospice patient in order to aggressively treat something which has a low chance of being bacterial even though the full results from the lab will not be known for at least twenty-four hours.

6. After making your pitch, ask family if they will support this.

7. When family informs you that they are calling the hospice team first before supporting anything, present them with the telephone by slamming it on the top of the desk. [Family in fact did not need to use the hospital phone. Family comes equipped with freshly charged cell phones].

8. After family informs you that hospice is coming to the emergency room, try again to talk family into hospitalization and aggressive treatment. Tell family that if not, you will send home a script for a broad-spectrum antibiotic. [See #14].

9. Stomp around a bit. Come back into the room where patient is sleeping and say, "Hospice is not here yet. Are they coming?" Family responds in the affirmative. Leave the examination room. Mill about the nursing station.

10. Act annoyed when hospice in fact calls the emergency room and directly asks to speak to you. Tell hospice over the telephone that you-- an emergency room physician who have never even met Old Man before this emergency room visit-- think that Old Man should not be receiving hospice services.

11. When hospice shows up, tell hospice and family that the first and best option is to admit patient to hospital in order to aggressively treat the possible bacterial infection for which patient is non-symptomatic at this time. 

12. Demand to know if case manager is also a nurse. [The answer is yes].

13. Advise that the hospice case manager will have to call the lab to get the results so patient can be admitted to the hospital [in a day or two] in order to aggressively treat the supposed possible bacterial infection. Don't ask what the patient [who still has opinions about his health care in spite of his current health status] or the family may want to do about this situation.

14. Insist that the best option is to allow patient to be hospitalized right then and there. Allow as to the second option is discharge without any script for an antibiotic. [This results in the case manager having to contact Old Man's doctor for said script].

15. Waltz away with your huge false ego and awful bedside manner intact. During the whole time, do not say two words to Old Man. [Family and hospice know better than you do about patient dignity and therefore strive to include Old Man in the conversation whenever he is awake].

sapphoq on life says: Fortunately, not all physicians are like the two physicians that Old Man and family have encountered in the particular emergency room.
     Unfortunately, hospital does not have a written protocol for medical staff to follow when dealing with patients on hospice who arrive in emergency room. This leads to situations where the treatment encountered by a dying hospice patient will be extremely variable, depending upon the personal beliefs, philosophies, and attitudes of whatever emergency room physician happens to be on duty at the time. 
     All physicians ought to honor the choice that terminal patients have made to utilize hospice. Hospice allows patients to avoid over-treatment and aggressive treatments according to their wishes. I will be advocating for systems change in respect to hospitals in the state where Old Man lives and procedures for care of all hospice patients who have to utilize emergency room services for an acute medical emergency.
     

Dad

     "I want to buy a car," Dad says. He is sprawled out on his easy chair at the assisted living house, barely able to keep his eyes open. He is tired. His color is ghastly-- like the color of rotting leaves after a heavy rain. I don't even know how he is still alive.

     "It's hard to get anywhere without a car," Dad says.

     I think to myself I don't blame him. If I could, I would have driven both of us out of his current life years ago.

     Dammit.