A year ago this month, my mother-in-law Sylvia Awe died at the age of 94 after falling and breaking her hip at an assisted living center in southwestern Washington state. She was among the last of a dwindling number of those seniors whom NBC Newscaster Tom Brokaw dubbed “the Greatest Generation.”
During her long life, Sylvia encountered many hardships, setbacks and disappointments, but she never became embittered nor resentful about what life dealt her. She was a fighter, an overcomer and a survivor, living life to the fullest with a positive attitude. Her strength of character was forged by living through the Great Depression and World War II.
Sylvia courageously moved to Vancouver, Wash., after graduating from high school in 1943 during the Second World War, traveling more than 1,500 miles to a major U.S. city after living all her life in rural South Dakota. She made the very long trip on a crowded train packed with war-time travelers as a very shy, sheltered, innocent young lady.
During World War II, she did manual labor at canneries, a meat packing plant and the Alcoa aluminum mill in the Vancouver area. It was very hard, arduous and even back-breaking work when women had to replace men sent off to wage war.
On June 1, 1949, she married Hugh C. Awe, the love of her life whom she met after the war. After only 13 years of marriage, she was plunged into a frightening, personal crisis she could not have imagined when her beloved Hugh, 40, abruptly died from a third heart attack, leaving her to rear their three young daughters on her own.
It must have been an overwhelming nightmare for her to be suddenly thrust into this crisis at the relatively young age of 37. My wife Barbara was only 3 at the time. After Hugh's death, Sylvia returned to work 23 years as a seamstress, managing to pay her bills and put food on the table for the family. She was so in love with Hugh that she never remarried.
Sylvia retained a sense of humor even when enduring pain. She was tough and had two knees and a hip replaced. She was determined to do what the doctors required to recuperate after each surgery. Her attitude was “no pain, no gain.”
When she broke a hip several years ago, she was at an age when anyone else would have been crippled or bed-ridden for life, but she rebounded. She was determined to walk again and not be confined to a wheel chair. She never gave up. My wife and I learned in January 2019 that she broke her other hip in a fall.
When Sylvia was discharged from a hospital and returned by ambulance to the assisted living center where she had lived for about two years, Hospice officials assured us and other family members that her comfort and pain management would be their top priorities. Sadly, the very opposite proved to be what actually ensued when she was denied pain medication for more than 10 unbearable hours, writhing in absolutely senseless agony!
The “comfort kit” promised by Hospice for her pain relief didn't arrive that Tuesday afternoon or even early evening. Due to the assisted living center, the pharmaceutical delivery firm and Hospice failing to provide it – despite repeated pleas for help, some of us family members had to frantically scramble and do all we could on our own to secure her relief when those agencies abysmally failed to do so.
A son-in-law and grandson even drove about 30 miles one way in heavy traffic to a private pharmacy to get pain medication. They arrived back with it half an hour after the comfort kit finally showed up. Sylvia did not get the pain medication until about 9:45 p.m. or more than 10 hours after her last dose in the hospital before she was discharged! It was miraculous she survived the excruciating pain. Most others undoubtedly would have succumbed to such intense, prolonged duress.
By the following Friday, Sylvia's pain had eased somewhat thanks to the assisted living center's kind, caring nursing staff routinely administering pain killers. That morning she was cogent and joked in her room with family members, a social worker and chaplain, reminiscing about how she and her daughters pulled together after her husband Hugh's premature death.
That abruptly changed, however, when a Hospice nurse arrived by herself and administered a “mysterious substance” in Sylvia's mouth after the room had cleared. My wife and I both personally witnessed her use the syringe and recorded the precise time it happened. A brother-in-law also directly heard her say she would give Sylvia pain relief as he was leaving the room.
Only moments after that happened, Sylvia dramatically became incoherent and virtually comatose – something which did not happen with previous medication. She was never the same afterward. My wife became so alarmed that she left the room to alert nurses at about 5 p.m. Sylvia was having extreme difficulty swallowing by then and direly needed attention.
Assisted living nurses said that night Hospice would not give any information identifying the pain medication until office hours on Monday. A year later, we still have not been able to confirm exactly what it was or the dosage given. Hospice even denies it was a Hospice nurse who administered it -- despite family members witnessing her do it!
Meanwhile that final weekend of Sylvia's life, she once again was denied the medication she desperately needed to reduce her terrible pain – either in the form of a crush order for pills she could no longer swallow or as a liquid. Once again, family members had to bombard Hospice with calls, but were told a doctor was not on duty that weekend to authorize it. Once again, she was denied urgently needed pain medication, not getting it again until about 9 p.m. Sunday!
The absolute torture Sylvia endured twice in a week was more like something one would have experienced in the Dark Ages, not the 21st Century! It was unbelievably horrific! It was too much for her to endure. She gasped her last agonizing breath at 4:30 a.m. Tuesday, Feb. 5, after suffering an inexcusable, appalling ordeal.
Five family members were so disgusted at what we witnessed and how Sylvia suffered such outrageous neglect that we felt obligated to alert the Washington State Department of Health, submitting a 10-page complaint outlining how she was so terribly mistreated.
The five of us also forwarded the complaint to other pertinent agencies, including the offices of Washington U.S. Senators Patty Murray and Maria Cantwell. If nothing else, we wanted to ensure that other patients and families be prevented from going through such a hellish nightmare!
A health department investigator commended the thoroughness of our complaint, saying it made her job easier. She told us she would contact nursing and pharmacy boards to report Sylvia's abuse, claiming it also would be escalated to the federal level, but that was quashed when another division of the department evidently seized control and tried to bury the final report -- claiming we wouldn't be allowed to see it until 2020. The investigator was ordered to re-write it according to that department's specifications.
We were originally promised a copy of the report last May, but felt like authorities were stonewalling us. They finally relented last September after months of us persistently requesting to see it.
The report does substantiate that Sylvia did not receive effective pain management or symptom control; there was not interdisciplinary group care planning and coordination of services, and there was a delay of pain medications, but the department closed the case, saying no violations were determined – although the evidence was overwhelming!
Government bureaucrats and health care administrators were more interested in mutually shielding each other than rendering justice!
Family members did not imagine or fabricate the incident of the Hospice nurse administering the unidentified substance – as Hospice has contended. However, three of us who witnessed events of that week and signed the official complaint were never interviewed, and the fact we had witnessed the abuse was ignored in the final report. Our account has never changed.
We were not in denial that Sylvia was “actively dying” as Hospice so often reminded us nor hysterical about her imminent death, but we were determined to defend her to the hilt to try to ensure her last few hours would be as dignified as possible, realizing her days were numbered and drawing to a close.
How in the world was this allowed to happen in the first place!? What is to prevent this from happening to others if health care agencies have no fear of punishment? It's been said a society's greatness can be gauged by how it treats its elderly.
Sadly, after being plunged into this nightmare, we discovered many mainstream media services have reported nearly identical accounts of dying patients denied proper pain management the last days of their lives by hospice agencies across the nation. It's virtually epidemic! What about those poor, helpless, isolated patients who have no family members to rise to their defense?
Sylvia now finally lies next to her beloved Hugh decades after his death in 1962. May you rest in well-deserved, pain-free peace and comfort, Sylvia. You are missed beyond what words can convey!