OK TO DIE PRESENTATION AT PULLEN 9-14 Disclaimer: We are not claiming - - PDF document

OK TO DIE PRESENTATION AT PULLEN 9-14 Disclaimer: We are not claiming to be experts in this field. We have no special

• training. We’re just people who had some experiences and done some research

prompted by those experiences. MY MOM’S STORY When my mom, Nadine Kuper, died in June at age 92 ½, she’d been living at Independence Village for 10 years, a retirement apartment complex. It’s not an assisted living facility but several home health agencies are available to provide a variety of home health services for residents. In spite of a fall in 2009 that led to a traumatic brain injury and complete loss of speech, writing and comprehension of speech, after 6 weeks of rehab she bounced back mostly, returned to her apartment and continued to be active – going to exercise classes, running a little store at IV 3 days a week, playing cards, and being part of family celebrations at our home or my daughters’ homes. Slowly she had less energy, wanted to go out less, had several falls in which she thankfully broke no bones. Her short term memory also got worse and worse over

• time. All of this seemed to her family like a to be expected slow decline given her
• age. She also had a long history of TIA’s (small strokes) but to our knowledge they

had been controlled with medication for some time.

Then on March 28 she had a TIA that sent her to Rex Hospital where she remained for 12 days as a cascade of other health problems emerged, including (1) an ileus in her bowel that required her stomach to be pumped out, (2) atrial fibrillation of her heart with pauses (her heart beating too fast and then stopping completely for short periods) and (3) a stricture in her esophagus that caused her to aspirate food into her lungs, creating a constant danger of pneumonia. Before she entered the hospital in March, no one in the family knew she had these

• conditions. We were suddenly seeing a cascade of health problems one on top of

another within a short period of time. Once the cardiologist got the afib heart problem supposedly under control, she was released to Rex Rehab and stayed there for three weeks before returning to her apartment in late April. Throughout this time, my Mom made it clear that she wanted to go back to her apartment for whatever time she had left, not to an assisted living facility or nursing home and that she did not want any extraordinary measures taken to keep her alive. I set out on a journey to make that possible for her. As the oldest of her 4 children, I had been designated as Mom’s medical power of attorney since 1999 after the death of my stepfather. In the fall of 2014, a friend of ours stayed with us while attending a conference of end-of-life issues held right across the street from Pullen and she gave us a book by

• ne of the conference speakers, “It’s Ok To Die”. Because I had read this book,

and given the state of her health at that point, I knew what I needed to do once Mom was transferred to the rehab center – get a MOST form completed for her.

MOST stands for “Medical Orders Scope of Treatment” which I learned about from this book. Tom will talk more about it later. Basically it is a document completed by a patient and signed by a doctor. It belongs to and is to stay with the patient at all times, whether at home, traveling or in a health care facility. I was out of town the day Mom was admitted to the rehab center and when I got there the next day, learned the she was incorrectly admitted as “Full Code”, meaning that if she stopped breathing or her heart failed, the rehab staff and EMT’s would use all means possible to get her heart or breathing started again. I knew that was not what my mother wanted. I told a nurse that mom should not be designated as Full Code and that I wanted to complete a MOST form for her. We did this in Mom’s room with her responding to the questions and the nurse filling out the form. Mom indicated that she wanted to be coded DNR (do not resusitate) and DNI (do not intubate) and did not want antibiotics if she got pneumonia or a feeding tube if she could not eat. When mom indicated “No” to a feeding tube, the nurse intervened with “But Mrs. Kuper, wouldn’t you want a feeding tube if it was only going to be temporary?” That nurse’s question was a turning point in what came to seem a battle to advocate for my mom and have her wishes respected in her dying process! I challenged the nurse that there was no way she or anyone could guarantee that the feeding tube would be “temporary” and she reluctantly agreed that was the case.

A few days later, when Mom was being transported to Rex Outpatient for a procedure to fix the stricture in her esophagus, I checked to make sure that her MOST form was with the papers the rehab center was sending to the hospital as it was supposed to be. The MOST form was not in the package and the rehab center couldn’t find it. I said that even if we missed her surgery appointment, we were not leaving for the hospital until the rehab staff found and gave me her MOST form which finally they did. At the hospital, I kept showing the MOST form to every medical person we encountered and emphasizing that it needed to stay with her every step of the way. No one seemed to know what the MOST form was. Finally a nurse in the pre-op area said that the MOST form was not recognized during surgery. I couldn’t believe my ears. When I protested, she said that I should talk with the anesthesiologist. He was a young doctor with a pleasant manner who explained that most family’s “waive” the MOST form during a surgical procedure because if anything happened to my mom while on the operating table, the doctor could intervene immediately to take care of the situation. I then asked him what guarantee he could give me that if Mom’s heart stopped beating or she stopped breathing on his table, she would be brought back by the surgical team with no brain damage.

Of course, he could give me no such guarantee, even though he said it would be highly unlikely for this to occur. At this point feeling shaken and vulnerable, I told this young doctor that as her medical power of attorney, I was not going to waive her MOST form. I wondered if I was being judged by the medical staff as an uncaring

• daughter. Before they took Mom to the operating room, I quickly called my three

siblings to tell them what had happened and got their unwavering affirmation that I had made the right decision. On Mom’s release from rehab back to her apartment, the rehab center would not, on my request, give me her MOST form to take home as they should have as it is a portable document that belonged to her. Four nurses insisted that the MOST form was “facility specific” and had to stay with them in case she was admitted again. This is absolutely not true. I had to take mom back to her apartment, knowing that until I could get the rehab center to release her MOST form, if EMT’s were called to deal with a medical emergency she experienced, they would begin their protocol of aggressive treatments that she did not want, and if she were taken to the hospital, a cascade of treatments would begin that would be very hard if not impossible to stop. I called her primary physician and explained to his nurse my dilemma. She suggested I go to the NC Medical Society website to download a document that fully explains the MOST form, including that it is a portable document owned by the patient that goes with the patient wherever she goes.

I found the document on the Medical Society website but could not print it out because I’m not a member of the Medical Society. I called the nurse back and she downloaded the document, sent it to me which I took to the rehab center the next morning and got them to release Mom’s MOST form. It stayed posted in a prominent place in her apartment until she died. Mom lived at her apartment for just over 7 weeks after returning from rehab. My sister and I had to keep increasing the level of home health services to enable her to stay there until on a Friday we though for sure we’d have to have her transferred to a nursing home the following week. My Mom was tired and ready to die. She told us repeatedly, “I am ready to go”. She died early on Sunday morning in her apartment as she had wished.

My Parents’ Story TOM My parents moved here from New Jersey to live with me in late1989 shortly before Ginny and I were married the following year. They had both been active and working well into their 80’s, but my mother had Parkinson’s disease and had been falling a

• lot. My father was caring for her, but it wasn’t until he had a stroke two years later

that we realized how much care he was providing. His hospitalization was extended to rehab and then to a nursing home, and my mother followed him there shortly. I knew he would hate it. The hardest thing I have ever done was tell my father that he couldn’t come home. His stroke had left him without the ability to swallow, and it never came back. This, of course, made aspiration a continual threat, and ultimately we allowed a feeding tube to be implanted. My father loved to eat, but he particularly enjoyed his coffee and an

• ccasional beer. He was angry about the restrictions imposed on him. He could no

longer drive. He was in a wheelchair. He had lost his independence. He was

• depressed. In the end, we let him have an occasional cup of coffee and take some

soft food by mouth. Comfort care. He died two years later at Christmas, after, according to my mother, gasping for

• breath. It’s not clear exactly what happened – another stroke, heart attack. I

wondered if whatever it was had been precipitated by the aspiration. By the time we got to him he was in the hospital on a respirator. I asked that no heroic measures be

undertaken and the end was not long in coming. He was almost 90. I don’t know if allowing the feeding tube was the choice he would have made without our influence. It did extend his life for almost two years, but I know that I would think harder about it if I had it to do over, and I certainly would have questioned my father more closely about what he wanted. Dyck (Tom & Arthur) TOM If we think about it at all, we all want a “good death,” but most people don’t prepare well for it . Our friend Dyck did. He had non-Hodgson’s lymphoma. He had talked about it for several years at InterPlay gatherings and written a series of what he called egg stories (for the swellings in his glands). He was not afraid of death or dying, his only concern his wife Lynda who suffers from slowly worsening dementia. He made extensive preparations, lists of people to call, a script to be read to his friends, a green burial in a simple wooden casket, and having a few of his friends wash his body. We participated in that ritual and although I had dreaded it, it was

• ne of the most gratifying experiences of my life.

There was one area we were concerned about, and so one day Ginny and I and a physician friend met with Dyck to ask about the plans he was making for Lynda’s

• care. It seemed a bit risky to do that as non-family members, but Dyck didn’t seem to

be offended. In the end, he did get most of what he wanted, but his ideas about what would happen to Lynda, that she could stay in their apartment with a little help, were unrealistic, and maybe influenced by some burgeoning dementia of his own as the

disease progressed. Might we have pressed him harder? Maybe. At what point do you stop being a good friend and become a busybody? Our InterPlay friends Tom and Arthur, who also died this year, didn’t have the same kind of time. Tom died of an apparent heart attack in his shower. He was sixty

• something. Arthur died in his sleep. He was 55. Ninety percent of us will have

something approaching the kind of time Dyck had to get our affairs in order. Ten percent of us will die suddenly and unexpectedly like Tom and Arthur. We are familiar with that likelihood in our own community at Pullen. It’s OK to Die GINNY Monica Williams-Murphy is an Emergency Room Physician. She wrote It’s OK to Die because she has seen, all too many times, people who arrive in her emergency room who suddenly realize they’re dying and have only a vague idea of what they

• want. “The ER is not the place to put your affairs in order”, she wrote. Or they have

a clear idea and advanced directives which family members override. She says this: “I am an ER doctor. Relative strangers show up in the Emergency Room and die right in front of me, or at least attempt to. If you arrive critically ill, I have about three minutes to find out your name, your medications, your allergies, your pre-existing conditions, your primary care doctor, your specialists, your surgeries and your vital signs – all while establishing myself as someone you and

your family can trust, while examining your heart, your lungs and your abdomen, while reading your EKG, while ordering tests and medications, and possibly, while placing a tube in your lungs or an IV in your neck, or while attempting to shock your heart back into a life-sustaining rhythm……. “I have to ascertain whether you are dying from an unknown cause or from an expected source, like advanced cancer. . . . I also have to know whether you have a Living Will, the identity of your selected healthcare proxy, and whether you have signed Do Not Resuscitate (DNR) or Do Not Intubate (DNI) orders.” So at the risk of seeming impertinent, we would ask if you have thought about how you want to die? Does your family, your doctor, anyone, know what you want? If you have advanced cancer, or if you’re frail and your ribs may be broken by compressions, maybe you don’t want to be resuscitated. But if you don’t have a DNR

• r a MOST form, the ER doctosr will do it, because that’s what they are trained to
• do. An Advance Directive, a Living Will, is not enough to make sure your wishes will

be honored, but 70% of Americans do not even have a Living Will. Questions for Discussion (in pairs)

• What conversations have you had with those closest to you about your wishes for

end of life care or with others about their wishes at the end of their life?

• If you knew that you were going to die tomorrow, what things would you need to

accomplish in the next 24 hours?

The MOST Form TOM MOST stands for Medical Orders for Scope of Treatment. It’s intended for people with an advanced chronic progressive illness or for people who’s life expectancy is less than one year. An Advance Directive such as a Living Will or Health Care Power

• f Attorney is a legal instrument requiring witnesses and notarization. Such

directives inform health care providers about a patient’s wishes. But in order for those wishes to be carried out, a physician or medical order is needed. A MOST form is a physician’s order and instructs other health care providers about what type and level of care to provide. Witnesses and notarization are not required. It must be filled out in consultation with a physician or certain other health care providers, and the patient or patient’s representative must sign. It does not replace an advance directive, but it may temporarily suspend conflicting

• rders in a previously issued Advance Directive. For example, a person has a Living

Will that indicates she doesn’t want her life prolonged if she has an incurable and irreversible condition. Years later when she has such a condition, she indicates on a MOST that she wants antibiotics and hydration contrary to the instructions in her Living Will. The instructions on the MOST will be honored, but rather than revoking those in the Living Will, will only suspend them while the MOST is in effect. A MOST is valid for one year and may be revoked at any time or renewed for one year periods.

Six states have a document like MOST, ten others are in active development. Forms like MOST are part of the POLST Paradigm (Physcian Orders for Life-Sustaining Treatment, the original form of this nature, developed in Oregon in 1991.) Since this is a medical order, the forms are available only through physicians or health care facilities or agencies such as home health or hospice. Many physicians or other health care personnel are unaware of the existence

• f the MOST or are confused about its requirements.

The form is bright pink so to make it easier to identify. In Ginny’s Mom’s case, we posted next to the door of her apartment, to try to prevent EMT from ignoring it. Without this form, EMT will begin life-sustaining treatment such as CPR before you arrive at the hospital, and if that happens, it starts a cascade that is difficult or impossible to stop. The PSAS (Personal Self-Assessment Scale) GINNY It’s not enough to identify what you want. It’s also important to know when you want

• what. This form is not legally binding on anyone, but it serves to help you decide

what you want when and to help guide conversations with family. Tom and I decided to each complete a PSAS form and discovered we have similar but very slightly differing preferences. At Christmas we sat down with our four daughters, gave them copies of our completed forms and talked with them about our choices. They were not happy, but they left knowing what we wanted and promising to honor it. Dr.

Williams-Murphy reports that it is too often the case that a family member who typically lives far away and has not been present when decisions were made will lobby fiercely to keep the dying person alive by any means and end up circumventing that persons wishes (often out of guilt or regret about not being present enough in the person’s life). Why Is Death A Stranger Here? GINNY In the chapter titled “Why is Death a Stranger”, the author writes: “We have reached an historical era in which most modern Americans have become strangers to death. Except for the elderly themselves, the rest of us are one or two generations removed from experiencing death as a part of life. Historically, families were multi- generational and children often witnessed parents caring for their dying older family members, who eventually died in their own homes. ….. During times past, death was not a “medical” event that happened in hospitals and other institutions of care. The passing of life was intimately woven into the very fiber of daily life itself. What has changed?” The author list three things: (1) We have the power of advanced technology and feel compelled and perhaps pressured by others to use it. As a result of our scientific advances, as wonderful as they are, the question that has arisen in the public consciousness is: “If we have the technology, why shouldn’t we use it? BUT, the indiscriminate use of technology in certain end-of-life scenarios may not serve the best interest of the one who is terminally ill or dying.

(2) We haven’t made our peace. We may have less emotional closure and peace with an elderly family member than we might have had in past times simply due to distance or our busy modern lives. Modern life challenges our ability to easily meet

• ur desires for intimacy within our families, to care for and be cared for by those we
• love. This leads to a need to keep our dying family member alive long enough for us

to “make peace.” (3) We no longer have the experiential knowledge in our culture of what happens at the end of life, of the usual pattern of how we die. We just don’t know what to expect when someone is dying. In a chapter of this book titled “Natural Death, Artificial Life and The Choices in Between, I learned in detail about the changes that usually occur in the natural course of dying when death is not a sudden event. I was then able to recognize these changes in my Mom over the course of several months and especially in her last weeks. This knowledge and understanding enabled me to not let the EMT’s take her back to the hospital when they came several times in her last weeks because she felt bad. It helped me to honor as best I could my Mom’s clearly stated wishes and let her go. Q&A if time.