Dignity in Care: One Woman’s Story

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:

http://dignityincare.ca/en

*  A fictional name is being used to protect this person’s privacy.

"Futile" Critical Care

This is an important new article in JAMA, showing the prevalence and costs of futile critical care.
In this study 20% of the critical care cases studied were deemed to be "futile" or "probably futile", at an average cost of $4,000/day and $21,000 per patient.

The reasons care was deemed futile are telling:

• 58%- Burdens of treatment grossly outweighed benefits
• 51%- Treatment could never reach the patient's goals
• 37%- Death was imminent
• 36%- The patient would never survive outside of ICU

Of the patients receiving futile treatments, 68% died before discharge, with a total 6-month mortality rate of 85%. Most "survivors": were discharged to long-term acute care or long-term care in severely compromised states, dependent on life sustaining treatments. A few were discharged to hospice or home to die. Most of these "survivors" were living in states that many would perceive as worse than death: dependent on life support or life-sustaining treatments, unresponsive or with severe medical problems.

An important aspect of the burden of futile treatments that was not examined in this study was the suffering that these patients endured during this time. The tremendous burden on their loved ones, particularly when they were likely confronted with many difficult decisions and ongoing stress and uncertainty was also not examined. Yet based on our own experiences and what we have witnessed in the families we have cared for, we can infer the importance of this issue. The author's commentary on this study on the RAND blog can be found here.

The patients and families in this study lost the opportunity for a "good death" experience. Their loved ones lost the opportunity for positive last memories of their loved ones. These last memories , whether positive or negative, are something their loved ones live with for the rest of their lives. When the memories are negative they may have complicated grief, ongoing anxiety or regret.

Timely advance care planning and realistic assessment of patients' status with honest communication are important ways we can help avoid these situations. POLST forms can help translate the wishes of the patient with end-stage chronic illness into medical orders that will be implemented wherever the patient is, avoiding unwanted and inappropriate resuscitation and life-sustaining treatments that lead to this situation. We can help promote education of acute and critical care staff about the costs of futile treatments and the alternative of transitioning to palliative care in a timely fashion in those who are in a futile state, so they and their families can have a quality end of life experience, instead of prolonged suffering.