A speech therapist and passionate advocate for residents of care communities, Phyllis Ayman is the author of three books: Nursing Homes to Rehabilitation Centers: What Every Person Needs to Know; Overdue: Quality Care for Our Elders; and Dignity and Respect: Are Our Aging Parents Getting What They Deserve? We spoke recently about how families can better prepare for the transition to assisted living or nursing homes—and what it will take to ensure that their loved ones have quality of life, once there.
Dan Cohen: Are recipients of care who are aging facing a system that’s unfamiliar territory to them and their families? How can we change the situation so that people understand what they’re getting into, and to ensure the quality of care they receive?
Phyllis Ayman: I have been advocating since my first book for people to really understand how this system works from the inside so that they are more knowledgeable, leading them to make better choices. Everything is always fine until it’s not fine. You get that dreaded phone call, whether it’s a stroke, a fall, accident, etc. Now your loved one is in a hospital and the next move is into some kind of short-term rehab in a skilled nursing facility. You’re already stressed in the untenable situation of making a quick decision based on a few choices from brochures or recommendations from the hospital social worker or discharge planner.
The unfortunate reality is that approximately 40 percent of Medicare beneficiaries experience some kind of adverse reaction—such as skin tears, pressure ulcers, and falls—the first 30 days in short term rehab. Of that, more than 70 percent of those issues are preventable or ameliorable.
DC: What advice would you have for families to avoid these adverse reactions?
PA: Even though people don’t want to talk or think about this, the reality is we all plan for crises. Whether you buy medical insurance, car insurance or burial insurance, you are planning for the inevitable. Wouldn’t you want to plan for a situation that might occur if you are going to need care? So, I suggest people “Plan by Choice, Not by Crisis.” Find out the important underlying issues faced by residents in traditional nursing homes, look into best practices, and devise a list of questions so you can make an informed decision.
Research and identify five nursing home environments that would be acceptable for your loved one if they needed to make that transition. If your loved one is hospitalized, visit the hospital discharge planner and share the list of acceptable nursing homes. People need to know their rights and that they are “in the driver’s seat.” But you can only make the best decisions if you know the facts and have done your homework.
DC: I could envision a high school course, “What reality is like for your grandparents and what you should know to help.” These are real issues for everyone who’s old, and your family, and you can use this knowledge to help later. We need to get people to change focus.
PA: That would be an important life skill to learn and spark important family conversations. But a conversation without the essential information, knowledge, or potential solutions is an empty one. I shared my approach with a woman who told me she had parents who were getting up in years and had medical issues. The daughter was aware that her mother might someday have to be hospitalized. So they had a heart-to-heart conversation, and she decided to research five skilled nursing facilities near her mother’s home.
Eventually the mother was admitted to the hospital and from there needed rehabilitation. The daughter told me she was so glad that she did her homework. But just as important, her mother was involved in the conversation. That’s key. Too many older people feel they have no control or active participation in the decision-making process. It takes away their sense of autonomy and their sense of self.
DC: What attracted you to becoming an advocate for people in nursing homes?
PA: My mother used to travel two-and-a-half hours several times a week to visit my grandmother because she had Parkinson’s Disease and had broken her hip. She was a very proud woman who needed help and wouldn’t leave her apartment because she was embarrassed to be seen with a walker. My mother helped with grocery shopping and other tasks. After a while it took its toll. My grandmother went into the nursing home three blocks from our home, and my mother would go every day from early morning to evening. I vividly remember the nourishing eggnog she prepared every morning and the clothes she brought home to wash every evening.
Several months later, my parents went on a two-week vacation, and my sister and I took turns caring for my grandmother. The first time I went into the nursing home, I remember my once-proud grandmother with this copious saliva all over her, sitting unkempt in the lobby. The smell was horrific. I ran out crying and ran around the block several times before I could go back to care for her. I helped her for the next two weeks until my parents returned from their vacation. Eventually I became a speech therapist. I worked with kids for a while and then a nursing home opportunity came along. I really believe that the experience with my grandmother left such an indelible mark on my mind and in my heart that, without realizing it, I was just drawn to it.
DC: Speech therapists help people who have swallowing difficulties. There is research that personal music helps people orchestrate their swallow again or helps people get motivated to eat when they’ve lost their appetite. Maybe they don’t want to live anymore. But then their appetite comes back and they live longer. To what degree is this part of a speech language pathologist’s job to advocate for better policy?
PA: Speech therapists work on much more than just swallowing. Our work encompasses all speech and communication. My specialty for many years was working with people who were ventilator-dependent, had tracheostomies or respiratory conditions. Many of these people were minimally responsive. I used to tell families, “Bring them music they liked.” If it wasn’t music but they were sports enthusiasts, bring them the tape of a game or something that they enjoyed—something to make that connection in the brain. I’ve seen it arouse patients many times, giving families the emotional connection they are longing for.
It’s up to all of us, not only speech therapists, to advocate and lobby for the best practices that will allow people to live to their highest ability—lobbying not only legislators, but also nursing home owners and administrators. Advocating for programs that will improve the quality of life and quality of care. That’s what I’ve done throughout my entire career. Though unfortunately not on a sweeping scale, but I was able to inspire small changes that in many cases helped achieve a higher quality of life, either for an individual, a few residents, or the facility overall. Easy, absolutely NOT! It’s been a hard road to travel, and not everyone has the stomach for it.
I’ve encountered many professionals who shrug their shoulders and say “what can you do, this is the way it is.” A colleague recently told me that my standards are too high. That is just unacceptable to me. Collectively, our aging parents should be considered a valued natural resource, and, therefore, they deserve better. We are all emerging elders and may find ourselves needing care in an environment other than our own home.
DC: You’ve been interviewing lots of people in long term care. How are we doing in the effort to improve it?
PA: I think there are many people trying to improve long term care. I think it’s a struggle. Obviously the pandemic highlighted what everybody has known for years and brought it more to the surface. There’s a greater urgency on the part of some people to make a difference. A lingering issue, though, relates to the mindset of owners, administrators, and staff. It’s like they don’t see any other way, even though some things don’t cost any money. This is how we’ve always done it, and this is how we are going to continue to do it.
DC: Is it just that people don’t like change or people don’t want to rock the boat or people are afraid, oh I’ll get sued, or somebody is going to come down on them for trying something?
PA: Right, I think it’s a combination of all of the above. I’ve been involved in situations where I was told point blank, “I don’t want to get sued,” when a new approach was nothing permanent but would alter a long-standing practice that could improve the quality of a person’s life.
DC: The client is then secondary. How do we make that primary?
PA: Change is scary. What’s it going to cost, right? I think a lot of administrators now are battling difficult issues, staffing, and the impact of the pandemic. Many nursing homes have a lot of empty beds and they are even more short staffed than before Covid. I’m sure those are the first and foremost issues that need to be solved. My thinking is that if you improve the quality of care and quality of life for the residents entrusted to your care, people will more likely want to come to your nursing home.
DC: What changes would you make a priority?
PA: I think there has to be a change in leadership styles. If staff felt their voices mattered, if there were more investments in them as people, if staff were offered more educational opportunities or some other form of professional development, if there was a way to provide them with a vested interest in the nursing home, rather than it seeming to be a dead-end and thankless job. It’s a basic human need to know that someone cares about your voice, what you have to say. I believe that that would be translated to the resident. Greater employee satisfaction could lead to better experience for residents.
Also, CNAs should be appreciated for the valuable work they do. It’s a back-breaking job. People think of CNAs as just performing custodial tasks, but the reality is CNAs have to make critical observations about those in their care and report those observations to a nurse or doctor. They are really the front line. I can’t tell you how many times I’ve gone to a nurse to ask about a patient and was told to ask the CNA. They report changes in temperature, skin color, mood, physiological function, eating habits, and more. These are critical observations that inform clinical treatment. CNAs should have more training and be treated with the respect they deserve for the value they bring to the nursing home environment.
I spoke to a former administrator of two long term care buildings in Wisconsin. When she was training CNAs, they had to move into the nursing home for a week and they had to take on whatever diagnosis was assigned to them and live in that diagnosis for an entire week. I think that’s brilliant.