I recently met a
remarkable woman named Patricia *, who at 80 years remains staunchly
independent despite a body that is growing old and more frail and a world growing
smaller due to the functional limitations caused by her heart failure. I’ve
learned a great deal about dignity-promoting care from Patricia, and I hope you
will learn from her too.
A person’s sense of
dignity is influenced by many things. Most importantly is how they see
themselves, and how they believe others see them. Independence, perceived
control, symptom management, attitudes of care providers- these and many other
factors can influence a patient’s dignity.
How do we promote dignity? Treating our patients with kindness, humanity
and respect. As adults. As individuals. As we want our family members to be
treated, and as we ourselves would want to be treated.
Patricia has been
incredibly curious since she was a child. Her life has been characterized by a thirst
for knowledge, continually exploring, learning and growing.
For almost fifty years, Patricia
enjoyed living by herself in an apartment by the University. Her passion is
textile arts and crafts, and her pursuit of this passion has taken her to some
of the most remote areas in the world. She has amassed a library of more than
6,000 books and a collection of museum-quality textile examples and tools. At
home in Madison, she has been an active participant in the arts, going to museums,
lectures, plays, concerts, and cultural events.
Patricia also had a
remarkable career in healthcare. She was and still remains a self-described
“change agent”. She worked as a registered occupational therapist, responsible
for state and county policy development. She was a consultant to
publicly-funded occupational therapy programs across Wisconsin. This woman
knows the healthcare system, at all levels.
While Patricia has had
heart failure for many years, she managed it well, and rarely let it slow her
down. Suddenly, a fall six months ago turned her life upside-down, forcing this
independent woman to move to the safer environment of an assisted living
community, and necessitating many visits with healthcare providers.
While she has been a
provider most of her life, she has now been forced into the role of patient.
Patricia has received some excellent care from her providers, but this
transition from provider to patient has been challenging for her. The most
difficult part has been her loss of freedom and dignity.
Threats to Patricia’s
dignity have often been unintentional, coming from well-meaning providers who
want to help her. However, when providers “help” in such a way that her
independence and freedom to make decisions is taken from her, she is hurt. In
talking about these incidents, she tears up.
Now that Patricia can no
longer get out to do things she enjoys, meals play a very important role in her
quality of life. And, being staunchly independent, she wants to be the one who
makes decisions about what she will eat, and she wants to make these decisions
based on all of the possible options available to her. So when she realized
that in moving to assisted living, others would be making many of the decisions
about what she would be allowed to eat, based on her physician’s orders, she
felt that her independence and quality of life was threatened.
Patricia shared with me
that she has spent years experimenting with foods and learning how her body
responds to them. While her functional status is quite limited now, her mind is very much
intact. It is very important to Patricia that she remains as independent as
possible in this area that has such an impact on her quality of life. To make
this happen, her providers have limited the information given to the kitchen
from the physician’s orders. Instead, she has been the one to tell the kitchen
staff about her food choices, restrictions and preferences, which has made
her feel respected and in control.. This simple act of allowing Patricia to
remain in control of these daily decisions about such a vital aspect of her
life has promoted her quality of life as well as her dignity. At the same time,
it helps her remain independent in this important area of dietary self-management.
Another threat to
Patricia’s dignity in her new situation has been the lack of mental
stimulation, which is so important to her. Now that she has trouble getting around,
her life is spent largely within the walls of her senior community, and attending
cultural events has become very difficult. A recent trip to the opera was
possible only because two staff members extended themselves in getting her to
and from the theater at night when they were off duty, as they knew how
important this was to Patricia. Getting to the opera promoted her dignity, fed
her soul, and gave her a memory that continues to inspire her.
Patricia’s message to
you as providers, based on what she has learned as a patient is to know, really
KNOW your patient.
Look beyond the failing body, the walker, the oxygen tank.
Learn about the person,
and incorporate that knowledge in your care.
Treat all patients as
you would want to be treated: with dignity, kindness, respect and compassion.
A simple idea for making
this happen in your daily practice is to ask the simple yet powerful Patient
Dignity Question when you meet a new patient:
"What do I need to
know about you as a person to give you the best care possible?"
Find a consistent way to
communicate what you learn about the person to other providers. Integrate this
knowledge into the care of that individual, working in collaboration with them
toward mutually valued health goals that maximize their independence and
feelings of control.
More information about promoting dignity in care is available at:
* A fictional name is being
used to protect this person’s privacy.
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