The Power of Memories
September 24, 2018 September 24, 2018 nancyvalko Alzheimer's, dementia, end-of-life, faith, family
Back in the 1990s when I was a home health/hospice nurse, one of my most memorable patients was a woman I will call "Georgia".
When I was assigned to Georgia, I was told that she had terminal lung cancer but did not feel well enough to get to her doctor visits and the doctor wanted us to find out what she needed since she did not want to be hospitalized.
I was surprised to find Georgia, her husband and 2 dogs were living in a small camper attached to a pickup truck on the gravel banks of a small river about 50 miles from St. Louis.
Georgia was a dignified and very thin older woman with a look of profound sadness in her eyes. She was getting oxygen for her shortness of breath and effective pain medication but her main complaint was unremitting nausea. Her husband was friendly and anxious to know what he could do to help his wife. Both knew her diagnosis was terminal.
Because of years working with cancer patients, I suggested a new anti-nausea regimen that Georgia's doctor had never heard about. He checked with a pharmacist and we started the regimen. It worked well.
With her symptoms now under control, Georgia finally spoke about her fears for herself and her husband. I was able to reassure her about measures to make her comfortable and other end of life concerns but she still seemed sad.
I also found out that they moved to the little camper on the river after their home was burned to the ground. That loss was devastating for both of them but they were grateful to be able to rescue many family photos.
Then I asked if she would like to show me some of the rescued pictures and she was delighted.
Each picture had a story and Georgia was happily animated as we went through several of them at each visit. Slowly, a picture emerged of a life well-lived with family and a generous spirit at the heart of everything.
As the weeks went by, I didn't know if we would get to the end of the pictures as she became weaker and weaker but I saw her spirits steadily improve while the sadness receded.
Georgia died late one night and her husband called to tell me that her death was peaceful for both of them. He thanked me for my help but I felt I should be thanking him and Georgia for the lesson they taught me about the beauty and importance of memories accumulated over a lifetime and remembered with love.
Today, life review and reminiscence therapy can be found in many hospices and nursing homes.
"REMINISCENCE THERAPY" FOR PEOPLE WITH DEMENTIA
Last week the Wall Street Journal had an article titled "To Help Alzheimer's Patients, a Care Center Re-creates the 1950s" about a California adult day care center for people with dementia.
This first of its kind center recreates a town square representing the time period from 1953 to 1961 when most of the patients were in the prime of their life.
The rationale is that dementia makes it hard for people to remember the recent past whereas older memories are preserved better for a longer time, "especially memories from childhood and early adulthood", according to Professor Dorthe Bertsen who heads the Center on Autobiographical Memory Research in Denmark.
According to one small study done in Europe, most participants showed no improvement on cognitive tests but there seemed to be improvement in their mood and quality of life.
In one section of the article about trying reminiscence therapy at home, Mindy Baker, director of education at George G. Glenner Alzheimer's Family Centers, suggests going through old photos, doing a favorite activity, and telling stories to trigger memories with the family member.
The goal is to facilitate memories rather than challenging inaccuracies because a person with dementia might get upset if their memories don't align with the facts.
But we don't necessarily need a fancy facility like the 1950s-inspired day care center to help people with dementia.
Over the years, I have helped care for many patients, friends and family with dementia in their homes, in hospitals or nursing homes. I saw people who hadn't spoken for a long time light up and join me in singing songs like "You are My Sunshine".
For my friend Dr. Anne who had dementia, I would tell stories about her achievements and show her articles that she had written and she would grin the rest of our visit.
I learned these techniques when I cared for my mother when she developed terminal cancer and Alzheimer's in the 1980s and I saw her memory slowly fading away.
Mom finally could not remember my name or my 2 year old daughter's but she knew we were people she liked. We would all sit together and watch Sesame Street episodes or old movies holding hands and I saw how happy that made my mother even though she could no longer speak.
Most moving to me was that almost to the very end of her life, she was still trying to load the dishwasher and making the sign of the cross. Faith and family were the two things most important to her and this was her way of showing and remembering this.
Memories are so important to all of us and especially at the end of our lives when they may be all we have left.
Personally, I'm saving up some good ones myself.
How the New "Palliative Care and Hospice Education and Training Act" Could Threaten Conscience Rights.
September 15, 2018 September 16, 2019 nancyvalko assisted suicide, Compassion & Choices, conscience rights, euthanasia, medical ethics, nursing, terminal/palliative sedation
Two weeks ago, I wrote about the new Senate Bill 693 titled the "Palliative Care and Hospice Education and Training Act" (now referred to the Committee on Health, Education, Labor, and Pensions) and warned about the current and future involvement of Compassion and Choices (the former Hemlock Society now pushing for legalizing physician-assisted suicide throughout the US) in "end of life" education for healthcare professionals. But Compassion and Choices is not the only organization supporting practices that, until the last few decades, were universally condemned. For example, last year the American Nurses Association took a position approving VSED (voluntary stopping of eating and drinking) to hasten death and that those decisions "will be honored" by nurses.
In addition, this year the American Medical Association House of Delegates rejected the AMA's Council on Ethical and Judicial Affairs (CEJA) report recommending that the AMA continue its long standing policy opposing physician assisted suicide. Instead the delegates "voted 314-243 to refer the matter back to the trustees for further deliberation".
Unfortunately, Senate Bill 693 does not contain any requirement of conscience rights protection in allocating grants to groups proposing to expand hospice and palliative care education programs for healthcare professionals.
BIOETHICS AND CONSCIENCE RIGHTS
According to Dr. Edmund Pellegrino, writing on the origin and evolution of ethics in 1999 for the Kennedy Institute of Ethics :
"In the 1960s and 1970s, building upon liberal theory and procedural justice, much of the discourse of medical ethics went through a dramatic shift and largely reconfigured itself into bioethics."
Instead of the old Hippocratic Oath principles requiring high ethical and moral standards for doctors including prohibitions against actions such as assisting a suicide, bioethics has evolved into essentially four principles: Respect for autonomy (the patient's right to choose or refuse treatment), Beneficence (the intent of doing good for the patient), Non-maleficence (not causing harm) and Justice ("fair distribution of scarce resources, competing needs, rights and obligations, and potential conflicts with established legislation" ) which often compete in actual medical situations.
Unfortunately, the principles of the new bioethics do not address the issue of conscience, which has now become a contentious issue in bioethics.
For example at the 2018 AMA meeting where the House of Delegates voted not to accept the Committee on Ethical and Judicial Affairs report's recommendation to continue the AMA's opposition to physician-assisted suicide, one doctor responded:
"We feel the AMA abandoned all physicians who, through conscience beliefs, want to support patients with this in states where it's legal," said Lynn Parry, MD, a Colorado delegate, on behalf of the PacWest group, which includes AMA delegates from six Western states that have legalized physician aid-in-dying. "I personally think we need to protect physicians in those states and would ask for referral back." (Emphasis added)
Dr. Ezekiel J Emanuel, MD, PhD, an influential physician who was one of the architects of Obama care and a formerly strong opponent of assisted suicide, wrote in a 2017 New England Journal of Medicine article "Physicians, Not Conscripts — Conscientious Objection in Health Care" that:
" Conscientious objection still requires conveying accurate information and providing timely referrals to ensure patients receive care.
"Health care professionals who are unwilling to accept these limits (on conscience rights) have two choices: select an area of medicine, such as radiology, that will not put them in situations that conflict with their personal morality or, if there is no such area, leave the profession. "
"Laws may allow physicians, nurses, pharmacists, and other health care workers to deny patients treatment or to refuse to care for particular populations, but professional medical associations should insist that doing so is unethical." (All emphasis added)
When it comes to issues like withdrawing feeding tubes from so-called "vegetative" patients, terminal sedation to hasten death and physician-assisted suicide, this last point from Dr. Emanuel leaves those of us physicians and nurses who refuse to kill our patients or help them kill themselves with few options to continue in our professions.
Years ago when I was threatened with firing for refusing to increase a morphine drip on a comatose man who was removed from a ventilator but still continued breathing, I was told that this was acceptable "end of life" care to "prevent pain". I know one nurse who was fired for refusing to give morphine every hour to a dying patient in no distress and barely breathing because the family demanded it. I've heard from families who were automatically offered hospice instead of rehab when their loved one was elderly and injured.
When such outrages occur even outside of formal hospice or palliative care programs and considered "normal" end of life care, ethical healthcare professionals find no recourse through their professional organizations or the law to protect their patients from premature death.
Thus when healthcare legislation like SB 693 promotes giving grants to organizations who support or might support VSED, assisted suicide, etc. to train healthcare professionals in hospice and palliative care without clear conscience rights protection, both healthcare professionals and the public are at risk of a normalized culture of premature death.
Two Wonderful Stories: A Prenatal Misdiagnosis; Man Saves Grandchild from Abortion
September 7, 2018 October 5, 2022 nancyvalko abortion, adoption, culture, prenatal testing
A PRENATAL MISDIAGNOSIS
Drew and Adriann Corpstein were devastated when they were told at 20 weeks that their unborn baby had a lethal brain abnormality called semilobar holoprosencephaly, an abnormality of brain development in which the brain doesn't properly divide into right and left hemispheres. They were told that the baby might only live a few days as a "vegetable" and encouraged the couple to consider a late-term abortion.
Instead they decided to trust God, deliver their baby and love him for whatever time they had with him.
Baby Matthew was born on July 29 but just the next day, the doctor gave them the stunning news that Baby Matthew did NOT have the lethal brain condition but rather hydrocephalus-an excess of fluid around the brain that can be treated with a shunt. Baby Matthew could then survive and even have the chance of a fully functioning life! (Click here to see a beautiful video of Baby Matthew and his parents.)
Personally, I have seen more than one prenatal diagnosis turn out to be wrong.
Of course, prenatal testing is not always wrong but there is cause for concern about the number of unborn babies misdiagnosed, especially with some newer screening blood tests. (Please see my February blog "A Dark Side of Prenatal Testing" )
But there are alternatives to abortion when the prenatal diagnosis turns out to be accurate.
As Baby Matthew's parents mentioned in the article, they prepared for end of life care for him when he was expected to die shortly after birth and there are often such hospices available in many areas.
There are also organizations like Prenatal Partners for Life and Be Not Afraid that provide support, information, resources and encouragement for carrying to term with an adverse prenatal diagnosis.
These organizations' websites also have parents' stories of their children with a range of prenatal diagnoses ranging from lethal ones like anencephaly to disabilities like Down Syndrome or Spina Bifida.
MAN SAVES GRANDCHILD FROM ABORTION
This month, I read an uplifting story that personally resonated with me.
With a heavy heart because his wife was "dead-set" on abortion for their 16 year old daughter, "Brian" took his daughter to A Woman's Pregnancy Center in Tallahassee, Florida. But when his daughter went in to speak to a counselor, "Brian" was surprised when a male counselor wanted to speak with him.
"Brian" didn't know that when a client comes into A Women's Pregnancy Center (a crisis pregnancy center) with another person, the staff determines the other person's relationship to the client and invites the support person to speak with a different counselor about their thoughts and feelings on the client's situation.
"Brian" told the counselor that his wife wanted their daughter to have an abortion and he wanted their daughter to be safe. But when the counselor told him, in effect, that 'You are made in the image of God for a reason and a purpose. You are Eliza's father AND the grandfather of her child. He is the Creator of the Universe and has given you this role. Trust Him, and He will equip you to take care of your family', "Brian" changed.
He went to his daughter and said "Baby girl, we've got this." He told his daughter to look at him and said "I'm going to take care of you." His daughter burst into tears of relief.
Sherri Daume, director of client services at the clinic, explained about ministering to a support person when a woman is considering abortion:
"The support person is often as confused and scared for their loved one as the client herself. They might have a grandchild or niece or nephew in the picture. They usually want to help the client but don't know how. We equip the support person with information and resources that help them support their loved one in a relevant way."
I totally agree with this and I have personally seen the effects of such support.
When my oldest daughter Marie became pregnant at 18, her friends were "pro-choice" on abortion. But, as she told me, she knew too much about unborn babies and abortion from growing up in a pro-life family. For Marie, abortion was out of the question.
Marie was surprised but pleased when she told her "pro-choice" friends that she would not have an abortion and they enthusiastically supported her decision. Many even offered to help. However, they did not support her anguished but brave decision to release her baby for adoption.
I told her that I would support her if she decided to raise her baby herself but she decided that her and the father's problems would keep her baby from having the best life possible.
That decision was hard for our family to accept but our beautiful oldest granddaughter turned 20 this week with the loving and proud parents who adopted her after birth. And despite my daughter's untimely death almost 9 years ago, we are so grateful that our family will also be able to celebrate this milestone with her and the family who adopted her.
Beware the New "Palliative Care and Hospice Education and Training Act"
September 1, 2018 September 1, 2018 nancyvalko assisted suicide, Compassion & Choices, education, food and water, hospice, law, medical ethics, palliative care, ventilators/life support
Right now, there is a Senate Bill 693 titled "The Palliative Care and Hospice Education and Training Act" to authorize more and better training in palliative and hospice care. Although a provision (SEC. 6. Clarification) was recently added to explicitly forbid federal funding for any health care furnished for the purpose of causing or assisting the death of any individual by assisted suicide, euthanasia or mercy killing, many of us have serious concerns. (The similar House Bill 1676 has already passed and sent to the Senate.)
As an RN with decades of nursing experience in hospice, oncology (cancer) and critical care, I have been involved with many end-of-life situations. I am an enthusiastic supporter of ethical palliative and hospice care which is indeed wonderful for patients of any age and their families.
Unfortunately, there is a growing trend towards calling unethical practices "palliative" or "hospice" care.
For example and just a few years ago in a Catholic hospital, I saw a nurse/friend's life deliberately ended due to so-called palliative and hospice care labeled "comfort care." She had recently suffered a serious brain injury and was declared hopeless after a couple of weeks. The family was strongly pushed to switch to "comfort care". She was taken off a ventilator, had her feeding tube removed (against her adult son's wishes), and continued to receive the sedation medications used when she was on the ventilator, even receiving an increase in those medications when she continued to breathe on her own. Despite my friend's son insisting that he wanted the feeding tube replaced and that he wanted to eventually care for his mother at home whatever her level of functioning was, he was told to wait until a doctor could order the feeding tube replaced. The hospital waited until he went home to sleep, transferred her to the hospice unit without his permission and she was dead by morning.
Unfortunately, similar stories have become increasingly more common since the 1970s when the Euthanasia Society of America changed its name to the Society for the Right to Die and promoted the new "living wills". Now we have well-funded groups like Compassion and Choices (the former Hemlock Society) not only promoting physician-assisted suicide but also trying to change medical ethics from never deliberately causing or hastening death to merely a "choice" about when and how to die.
Two years ago in my blog "Is Compassion and Choices aiming to become the "Planned Parenthood" of Euthanasia?, I warned about the current and future involvement of Compassion and Choices in "end of life" education.
With over $22 million in 2015 net assets, a 4 star rating from Charity Navigator, enthusiastic media coverage and a new "Federal Policy Agenda for 2016 and Beyond" , Compassion and Choices increasingly appears to be following in the 4 star, politically and media supported, $1.3 billion dollar revenue ($528 million in government taxpayer funding) steps of the Planned Parenthood Federation of America.
While Compassion and Choices claims that it just "works to improve care and expand choice at the end of life", it also admits that "We employ educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals." (Emphasis added)
THE PALLIATIVE AND HOSPICE CONNECTION
Compassion and Choices has worked for decades not only to legalize physician-assisted suicide in every state but also to normalize and integrate physician-assisted suicide into medical practice and reaches out to established medical groups like the American Academy of Palliative and Hospice Medicine (AAPHM.
Now, Compassion & Choices' website has a video presentation based on this article titled "Understand the Clinical Practice of Aid in Dying" for doctors and other clinicians. The presentation even offers continuing medical education credits.
This would not be possible if the AAPHM had not changed its position on assisted suicide from opposition to "studied neutrality", a position that the American Medical Association itself is now considering.
Compassion and Choices also supports two other "legal" options for assisted suicide in states that haven't passed physician-assisted suicide laws. One is "voluntary stopping of eating and drinking (VSED)" and the other is "palliative sedation-Sometimes called terminal sedation". Significantly, the recommendations include the admission that "VSED includes pain and symptom management" and "Palliative sedation must be medically managed by a healthcare provider". Thus the need to influence and train hospice and palliative care providers.
WHERE THE MONEY AND POWER IS
Compassion and Choices now has its "Federal Policy Agenda / 2016 & Beyond".
The priorities on its agenda include:
"Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient…." (Emphasis added)
Also included are
"Professional Education and Development" training programs for doctors and other providers "in discussing terminal prognoses and death" and "Policies and Payment Systems" to change medical policies and payments to a "a value-based healthcare payment system" that will "(e)ncourage Congress to direct CMS (the Centers for Medicare and Medicaid Services) and other federal agencies" to withhold "appropriations or other funds" for treatment that was "provided but (deemed) unwanted".
This last provision reinforces the fear many healthcare providers already have that, if in doubt, it is safer not to treat a person rather than treat him or her in hope of a good result because of potential lawsuits or reimbursement problems.
In the meantime, if the Compassion and Choices federal policy agenda is successful, they stand to benefit from a potential windfall of government taxpayer funding to provide their currently "free consultation, planning resources, referrals and guidance".
I have already contacted my state senator to express my concerns and urged him to vote "no" on SB 693.
As Nancy Elliot, chair of the Euthanasia Prevention Council USA, ended in a great letter to Senators opposing the Palliative Care and Hospice Education and Training Act :
"instead of creating a rival form of palliative care…Wouldn't it be better to educate/update all physicians and nurses about pain and symptom management?"