Tuesday, November 24, 2020

the right to die v. being required to be tortured by devastating, ravaging illness

A retired nurse I met when I lived in Key West responded to yesterday's post: 

Sloan Elizabeth Bashinsky: What a life-loving, fun, often hilarious, unabashedly straight-shooting, wry, beautiful, authentic human being

So sorry that your niece is going through this, Sloan. One day there will be a world with no cancer, maybe not in our lifetime, but I know it will happen. God be with her. And with you. 

I pray for the day none of us has to announce such news about a loved one! We nurses have always been suspect re a vaccine to cure cancer, because of the wealth there is in giving chemo to so many patients. One would hate to think a cure has been known for decades but withheld and I pray it's not.

I am in tears after reading your blog about your namesake. Her beauty and goodness shine through her eyes and her smile. I totally understand your anger with God right now. I'm happy that the two of you have re-connected so personally at this time in her life and yours and I know your pain is as great emotionally as hers is physically. I pray that she will find a freedom from pain and a deep peace and joy in living before her young life ends. And that you will find the same deep peace and joy while you help her through these final months. You're a good man, Sloan, and she's lucky to have you in her life at this time. May God and all the angels who visit you help you through this. 

Thanks, Peggy. Front line nurses, such as yourself, (and doctors) , live with the dying and death every day. I have never felt science will develop a cure to cancer, perhaps someday. Was cancer prominent before people became civilized, lived in cities, used chemicals that polluted food, water, land, air? I don't know. Do chemicals and stress cause cancer and other diseases? Looks to me medicine spends most of its time treating results, not causes. But, yes, Sloan Elizabeth, is a beautiful human being, and I'm truly fortunate to have gotten to know and become close to her.

I'll agree wholeheartedly with you there, that medicine spends most of its time treating results, not causes. But thank God for all those research scientists who spend not days or months or years but decades of their lives trying to find causes for so many of our fatal diseases, sometimes with almost primitive conditions and materials if they can't get long-term grants. They are truly the unsung heroes of medicine, in my opinion. Working in hospice care in '88 after I left state employment was wonderful for me. I'd always wanted what England had, palliative care under hospice conditions and finally it came to the United States. The beautiful Gerstenberg Inpatient Center had only been in operation for a few weeks when I contracted to be their night nurse. It had and still has one of the most beautiful pavilions I've ever seen in any building with palm trees of all sorts and other trees reaching to the second level, and when I first started, there were even a few birds singing in them. It is behind the elevator and in front of the nurses station and was a very peaceful place with a little water fall that could be heard all over the building, with comfortable benches for staff, patients and families, in addition to the serenity walk outside if families and patients wanted to be out there in the courtyard with the patient rooms around it. I loved every minute of it, even the most sad moments, like caring for the small Hattian baby with hydrocephalus whose parents never came to see him and the wedding with the bride dying very soon, and so many other memories of that place during those three months of contracting until they were able to hire a night nurse. And then three weeks after my mother died there ten years later, I started contracting on a wonderful outpatient team with the best supervisor and manager they ever had (except for my own daughter, Susan Butler Herne, many years later, of course:) I smile, but I know from her staff that she was a wonderful supervisor. She's a hospice admission nurse at one of the local hospitals now, admitting the imminently dying COVID patients as well as others to hospice care) and then helping get the nurse telephone triage team started so no patient or family member ever again had to deal with an answering service and working on it after the teams left for the day until my retirement in '02, right before moving to No Name key and meeting all of you later after I moved into Key West. Working in hospice care was always a blessing to me, as it gave me the privilege of helping the rest of the team of nursing assistant, social worker, pastoral counselor and music therapist prepare the patient and family for the certain death that was coming. The only sad cases were some of the ones we didn't have time to prepare, who came into hospice care in the home or the center for only a day or two when death was imminent and there wasn't much time to prepare the families that it was going to happen within a day to hours. Some of my patients were under hospice care for up to two years or more, but the doctor still certified them for it every six months, unless they chose to opt out or he no longer believed they were terminal. We had very few of those patients. Just coming into hospice care does not mean the patient is going to die within six months. If he or she doesn't and the doctor still believes the patient is terminal,, he or she in good faith will re-certify the patient for six more months under hospice care, for as many times as is necessary, which is a good thing, because if the patient has pain at all, he or she is able to have enough morphine or whatever the doctor orders for as often as every hour if needed. Hospitals cannot do that, except for their hospice units, which are staffed with hospice doctors and nurses. Hospice makes having a terminal illness bearable and even pleasant for many. It is going to be the only way for me when I know I'm terminally ill. And for the most part, the dying process with the patient was and is still a very peaceful and loving one and I thank God I (and that Suzy who still is) was a part of it before my time as a practicing RN was over. I wish that kind of peace and love for your niece when her time is near. The entire hospice process over months or years, as with some, is a peaceful and loving process. The hospice team and the patient and family usually become quite close. I'm not talking familiarity, but just a close and caring process that happens between them throughout the patients' time with hospice, and I cannot recommend it highly enough for anyone who knows he or she has a terminal illness. All my patients were on morphine, most from the beginning because of pain or shortness of breath that oxygen alone did not help, but contrary to common belief among lay persons and sadly, some in the medical community, it did not hasten the patients' deaths. I say nothing now when someone tells me "they killed her with morphine." I know that if the hospice team was unable to convince the person that it did not cause the death of the loved one, I, who was not involved cannot, so I do not try. But, trust me, morphine will not make anyone die any sooner than he or she is going to die. It just makes the death easier as far as pain and breathing are concerned. My longest term patient, a little over two years, was on morphine and oxycontin both for the entire time and he was up walking around, going out to dinner with his family and enjoying what life he had left until the week he died. Sadly, his wife who had a difficult time for quite a while coming to terms with his terminal illness, was diagnosed with a fast developing cancer when I was in triage one night. I couldn't believe what I was hearing when the nurse called me for equipment for her. I went to the home to see them both the next day before I went to work. She took one look at me and said, "Can you believe this?" And, she had a smile on her face when she said it, as she knew her dying would be peaceful and pain-free. There have been exceptions to this, as a few of my patients were out of pain control for days before we/ the doctor found a combination of pain meds and dosages that put them into pain control. But they were the exceptions. In her case, she did not live long enough to suffer much pain. She was gone in days, months before he died. That was very hard on him, to have to watch her die before he did, when they were both reconciled to his leaving her. 
Sorry, I took up so much space on your page, Sloan, but any chance I have to advocate for hospice care, I'm going to do it. Unless this country as a whole votes in favor of assisted suicide one day, hospice is the only way to die if one knows ahead of time that death is near. Of course, if a patient is in the hospital, sometimes things happen and there's no time to call hospice. I have to say that although I don't know about their pain regime, but the nurses, doctors, respiratory therapists and sometimes the hospital chaplain or priest are all making sure the patients with COVID-19 do not die alone. They stay with the patients to assure that even though their families can only say goodbye by phone or tablet, since they are not allowed to be with them in the hospital, those patients have one of the caregivers with them at the time of death. I don't know how they're doing it, but I heard one young nurse say no other patient was going to die alone on his watch if he had to come in on his day off to assure it! And God bless them each and every one. They are having to do an impossible job every day they are scheduled to work and then some, but after a day, sometimes two, off at home or in a hotel, they come right back and do that seemingly impossible job all over again, because that's what caregivers do and have always done. 

A great deal of manpower, equipment and money is spent trying to defeat the inevitable after resistance becomes futile. Kinda reminds me of Trump. I hope I don’t end up lingering in a facility. I think a person with a terminal, debilitating, ravaging illness should have the right to assisted suicide. I’m sure there are pills that work just fine. I wondered yesterday if my niece is being spared living in hell on earth: fractured America? My friend who frequently reports angels visiting him in dreams, visions and face to face, reported the other day from angel Michael: “The only thing that will reign supreme after Biden is sworn in is Chaos.” Looks to me that Chaos already reigns supreme in America. Hydroxychloroquine and zinc could have prevented coronavirus contribution to the Chaos. Vaccines don’t affect human thinking and behavior.

Due to weak pee stream, I recently had prostate examination, biopsy, sonar. Prostate normal size and texture. 3 of 8 biopsy samples came back positive. Gleason number for the three positives: 7,8,8. Moderate aggressive cancer. Cat-scan and gamma bone scan showed clear outside prostate. Have history of cranky bowel, and radiation treatment disrupts bowel and urinary function, both already compromised. Surgeon yesterday told me about awful recovery from having prostate removed. Have appointment with oncologist in a couple of weeks to discuss radiation option. 8 weeks, 5 days a week. One of my daughters has retired oncologist in-law. He told me that 90-year-old men that die often are found to have prostate cancer that never was diagnosed, and he guaranteed me something else would kill me sooner. So, the other option is to do nothing. 
The federal judge I clerked for, after his beloved wife died, and his body started failing him, shot himself with a .38. Shocked everyone but me. I don't have a .38. Prefer a pill. The surgeon said he would not operate until I had been cleared by a doctor for anesthesia. Heart exam, EKG. I didn't say dying under full anesthesia would be a great way to go, compared to many other alternatives. This won't be a fun conversation with my daughter and her husband, nor with her sister, who is a pediatric eye surgeon.
I had a dear chess playing friend in Key West, who was married to booze and cigarettes. I don't use either. It finally caught up with him, he was in a coma in the local hospital, with pneumonia. They helicoptered him to a Miami hospital, where they treated him 2 months and brought him back to life, he only had Social Security disability and Medicare (Magellan). They sent him to a nursing home, where he was another about equal time. He escaped, came back to Key West with a surgical tube still in his belly. Visiting aides came to his Housing Authority apartment several times a week. He went back to his old habits, and after maybe 6 weeks. he died, alone. Did medicine do him any favor? Rhetorical. I tell you all of this for your information, not for a response, unless you have something to add that I don't already know.
I hope my niece will use the Bashinsky family money available to her, to live out her remaining days in her home or with a friend.


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