Coping: Doctors Shaw & Weinman
by Tyra Phipps, Ed. D. (tyra.phipps@gmail.com)
Ms. Robyn Grant, Director of Public Policy and Advocacy with Dr. Penny Shaw, recipient of the Consumer Voice Leadership Award for 2016.
Dr. Penelope “Penny” Shaw received the Janet Tulloch Memorial Advocacy Award from Ms. Robyn Grant, MSW the Director of Public Policy and Advocacy, in 2016. She had lived more than “15,000+ shifts” in long term care. This extraordinary woman earned a Ph.D. She has used her ability to articulate, motivate, and bring about changes to improve conditions for those living in long term care. The following are excerpts from her acceptance speech on November 3, 2016, that details each one of the causes that she holds dear to her heart.
“As a resident myself, with more than 15,000+ shifts of personal experience and a few years as an advocate, I confirm what you already know. There are a lot of problems out here, many of which I have learned firsthand. Lack of privacy. Paternalism in attitudes and practices. Indignities. Being told only people who work need to have showers more than once a week. Lost clothes. Individuals wearing shoes without socks. Residents monitored for food intake when the problem is being given food they don't like. Residents who choke when fed too fast. Residents with psychiatric disabilities needing specialized care. Expected to do without. Unsafe lift transfers. In case you missed this one, medically fragile children at Plantation Kidz Korner Nursing Home in Florida. Left in wheelchairs all day long. Without activities. Or even a toy or stuffed animal. Waving. Reaching out for attention. No one responding. 1 RN at night for 59 fragile children. Sound familiar?
As you know, even more serious are the unnecessary deaths. Those drugged with inappropriate antipsychotics from intentional understaffing to increase profits. I have a colleague whose friend died this way. Those whose change in physical condition goes unattended to. Someone I knew personally was unwell, and begged for two weeks to go to the hospital. When she was finally transferred, her pneumonia had become septic and she died. Many family members have suffered similar losses. Was her nurse inadequately trained, overworked, or uncaring? Nurses for whom the profession is not a vocation but one that pays better? The lack of overall high-quality, safe and timely care is leading to tragic events.
As you know, industry in these ways exploits the most vulnerable, the frail, and severely disabled. Money to be made. Importance of shareholders over care. Indifference. The powerful and the powerless. A fundamentally flawed system. With complaints, fear of retaliation. A culture of silence. Facility staff often aware of the inhumane conditions in which some residents live. Habituated, they make rationalizations. We can't hire for common sense; it's the nature of the business. I don't want to hear about any more problems here; I'd like to think this is a beautiful place to work. Instead of making rationalizations, providers should have the policy committees of their national professional associations address this system of harm.
As experts YOU know which measures will bring positive change. Maintain confidence in your expertise. Continue your vital work. Supporting us. Creating public awareness so we are not invisible, overlooked and undervalued. A recent neglectful death judgment of only $3,000 is a reflection on our country. See that our humanity is recognized. Use outrage to make industry and government accountable through better oversight and enforcement of the regulations. Push forward policy initiatives. Pass laws that increase protection. Encourage lawsuits. Be voices speaking out for decency and reform. Be eyewitnesses of human rights violations, a conscience, individuals who are not bystanders to suffering. As ordinary citizens, as citizen advocates, more than those who hold office or traditional sources of power, you CAN make changes, however slowly.”
Dr. Richard “Dick” Weinman earned a Ph.D. and is a broadcaster. He is an extraordinary individual who wrote, created, and produced THIN EDGE of DIGNITY. This twenty-minute documentary details what life is like in assisted living. While the perception of most people may be that only the elderly need long term care, it was a different experience for Dr. Weinman. His car was hit by a cement truck. He was removed from the crash by Jaws of Life. With many broken bones, surgeries and many months in rehabilitation, he found himself able to move a couple of fingers, stand for a short period of time, and only able to take a few steps. Prior to that tragedy, Dr. Weinman was a professor. He had also cared for his wife during the seven years while she struggled with Alzheimer’s. He never gave up caring for his wife, nor speaking out for those confined in long term care. In fact, he now writes for AARP. The following blog is a sample of his work which first appeared on October 30, 2016.
Who We Are – The Thin Edge of Dignity
I have free choice of mind to do what I want. I don’t have the body to do it. I depend on others to do it for me.
The “others” may own, manage, or staff the facilities of a new and growing Long Term Care (LTC) industry, now bulging because the “Baby Boomers” have boomed, increasing the need to care for the weak, ill, or damaged, who languish in their midst.
One entity in this landscape of dependency is the Assisted Living Facility, or ALF. That’s where my body resides.
An ALF is a community, peopled with those whose needs swing widely. I am cognitive and aware, but I’m disabled. I can’t perform most simple tasks of a day’s living – in LTC jargon, ADLs (Activities of Daily Living.) If you can’t perform two ADLs, you may join us in an ALF.
Some in my congregate residence (Why is it called Assisted Living Facility and not called an Assisted Living Residence? That’s what it is. [A prison is a Facility.] But try saying ALR. The soft voiceless labiodental fricative (f) is easier and far less formidable than the liquid consonant – rrrrrrr!
Some of the congregation in my residence are disabled like me, but, unlike me, the result of illness or a stroke; some are in the fog of dementia. Other residents are frail, pushed in wheelchairs, or shadowed by a caregiver as they shakily or painfully push their walkers.
There are those in my residency who are relatively independent; they do things for themselves, take care of themselves. They might only need their meds ordered, organized, and distributed to them. Some just want to avoid the tasks of housewifery: shopping, cooking, making beds, cleaning house, doing laundry. Some just don’t want to live alone, and seek the company of others. Some have simply given up, and long for a quick and painless death; they no longer want to endure the pain – or boredom.
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There is an African proverb that says it takes a village to raise a child. In the non-Western world, it also takes a village – literally to assist an elder into the final years of life with care, dignity, and respect. Cultures that honor a life lived.
In Europe, governments will assist in the care of elders.
But, here in the United States, private corporations have built and operated facilities of congregate which has established a Long Term Care industry. Chances are they will grow and enlarge their profits as the elder population grows, family size decreases, families disperse geographically, and women play a larger role in the work force.
We are a modern society, without adult children, grandchildren, brothers and sisters, uncles and aunts, nieces and nephews all living in a single abode or the same community or the same region or even the same country. It once took a village. Today, it’s an ALF.
The ALF (Assisted Living Facility) is oftentimes the start of long term care. Dr. Weinman may never transition to skilled nursing, but his writing and video present the realities of much needed personal care. His frank and candid viewpoints of life in assisted living is a testimony to his courage and ability to deal with adversity. He chose to cope rather than give up. Nothing will stop his vitality, passion, and creativity. Whether reaching out to the masses or writing for AARP. Dr. Richard Weinman is a true hero making changes in the perception of how the elderly and disabled should be treated in long term care.
Dr. Shaw stated, “As ordinary citizens, as citizen advocates, more than those who hold office or traditional sources of power, you CAN make changes, however slowly.” No matter how long it takes nor how slow the process, Dr. Weinman made his plea for help by saying, “In the non-Western world, it also takes a village.”
Questions for Consideration:
1. Is there a nursing shortage? Yes. The Bureau of Labor Statistics currently list 2,857,180 Registered Nurses and only 1,443,150 Aides. The American Nursing Association featured an article in 2012, The Shortage Isn’t Stopping Soon. The nursing shortage has existed for decades. The latest national reforms for accessing health care systems are requiring more nurses. Unfortunately, there are fewer people entering the nursing profession the answer is the traveling nurse or agency nurse. These nurses can make up to $150,000 a year. They travel to facilities where the staffing is shorthanded or at a bare minimum. They can keep facilities open to meet state requirement for staffing on a temporary bases, but are they really the answer? In long term care, an agency nurse may be fully clinically qualified to care for the patient. The problem is that they really do not know the patient preferences and or needs.
2. Are there additional risks posed with understaffing of a facility? Yes. Understaffing or uninformed nursing aides means there are more problems with dementia patients and those who have mental illnesses. These patients require more needed supervision and redirecting. For instance, a dementia patient may urinate in a shoe or use the trash can for a commode. They may also pose serious problems by wandering into other rooms and even laying down in another patient bed. There can be difficult behavioral problems with yelling for hours or days that can wear down the patience of any nurse. Understaffing is a difficult problem for managing the bariatric patient. The leg of a bariatric patient can weigh well over 100 pounds. Maneuvering this type of patient for hygiene, cleaning, and wound treatment can require every member of the staff on the floor and sometimes more. Hoyer or mechanical lifts can be helpful with patients weighing 500 to 600 pound, but there is always great danger in repositioning the patient because of the possibility of the mechanical breakdown. A patient weighting more than 600 pounds can require as many as ten to fourteen men to assist with any kind of body work or transportation. Another difficult patient to monitor is the former prisoner who has now found a new home in long term care. Sex offender, child molesters, pedophiles and perpetrators of assault and battery now reside in long term care systems. That group of individuals requires nursing aides to monitor not just their whereabouts, but unwanted advances. Then there are people moving to long term care who simply just do not want to take care of themselves any more. There are also families that leave an elderly family member at the front door of a facility. The nursing aides become the substitute family for this type of resident. What do these kinds of situations mean for the personal care of a loved one? Quite simply, nurses at all levels triage patients. The residents with the most critical issues get all of the attention. Personal care of other residents in the way of toileting, feeding, and even medication can be delayed for hours.
3. Is there a physician shortage? Yes, and expected to get worse. “With a growing, aging population, the demand for physicians has intensified, and communities around the country are already experiencing doctor shortages. A 2017 study conducted for the Association of American Medical Colleges by Information Handling Services Inc., predicts that by the year 2030 the United States will face a shortage of between 40,800-104,900 physicians. There will be shortages in both primary and specialty care, and specialty shortages will be particularly large.” The changing paradigm has led to hospitalist rather than primary care doctors covering patients in the hospital. Rural areas feel the effects of physician shortages more so then metropolitan regions. Medical schools are encouraging a team approach to care for patients. More physician assistants’ are fulfilling the duties of the physician. That is not enough. Additional federal support is need to train at least 3,000 more doctors a year. The best answer to date is increase the amount of federally funded residency training positions.
4. How do shortages affect care? Traveling nurses or agency nurses help to keep nursing homes open when the staff is short the consequences can be lack of continuity of care. An agency nurse may know the clinical applications, but not understand the particular need of the resident. This means more confusion and uncertain exists for the resident. Even worse, there may be a delay of care with physician shortages. A resident in a long term care facility needs transported to the specialty physician. The logistics of transporting a resident with multiple conditions can be quite complicated. A physician who delays care for vacations, cut backs in office hours, or simple indifferences that can cause a delay of care that may end in an untimely death for a loved one. Even worse perhaps the worst of all is no care. Father Eric told a story on May 19, 2017, that he had a parishioner in in 70’s with failing health. The man wore a colostomy bag. He could no longer drive. He worried about caring for his wife by himself, so he placed her in a nursing home that promised good care. The parishioner walked two and a half miles, most day, to see his wife. He would feed her lunch and visit with her in the afternoon. Late one night he received a call from a nurse at the hospital who said, “Your wife died.” She hung up and the parishioner was devastated, but called Father Eric. Father Eric went to the hospital found the body bag, unzipped it, and blessed the deceased. It was too late for Last Rites, but at least the parishioner was comforted in knowing that his Priest cared.
5. What are the risks when nursing shortages last for extended periods of time? After months or years of nursing shortages at a facility, even the strongest of nurses suffer from low morale and job dissatisfaction. Turnover rate soar and patient care suffers. For instance, skin rashes may not be reported leading to outbreaks of scabies or bedbugs. Patients may not receive wound treatments as scheduled. Indwelling catheters may be left in the bladder much longer than the physician recommended thirty to sixty days. Showers or bathing of residents can be postponed or skipped. Call bells may go unanswered for more than two hours leaving patients with a feeling of helplessness. Unanswered call bells mean that patients are left in urine or fecal matter for extended periods of time. Patients not being properly repositioned in a timely manner can lead to bedsores, sepsis, and even death. Hurried nurses make more mistakes with medication, reporting and doctors’ orders. Communication breakdowns are more frequent. Tempers flare. The entire situation precipitates feelings of uneasiness, fearfulness, and hopelessness that can lead to a broken spirit and an untimely death of the resident.
6. What can be done to cope with future uncertainties of the healthcare systems in America? In the article, 27 Ugly Truths About Retirement written by Ms. Alaina Tweddale, January, 2017, there are three recommendations for the average person to deal with medical expenses. First of all, be sure to get supplemental insurance because Medicare will not cover all of the medical expenses. It is a good idea to prepare in advance of the actual retirement date and read through supplemental insurance plans to find one that most closely matches current and anticipated medical costs. Secondly, medical expenses are expected to rise sharply in the future. “The average couple retiring today can expect to pay upwards of $377,412 in out-of-pocket health care costs. That’s according to a recent retirement health care costs data report released by HealthView Services.” Thirdly, Ms. Alaina Tweddale states that more than two-thirds of the people over the age of 65 will require long term care. In America, the cost of a room can be $8,000 to $10,000 monthly with annual cost of more than $100,000 a year. This amount is not covered by Medicare. It is private pay. The daily rates may not include Wi-Fi, cable, laundry, or telephone. All medicines are billed separately from the pharmaceutical company working with the long term care facility.
October, 2022