Our Bodies, Ourselves

Within my first year of being a dietitian, I received a consult for enteral nutrition recommendations from one of our hospitalists. The patient in question was an elderly man who, due to the normal aging process, had lost the ability to swallow foods and liquids safely. He wasn’t alert enough to talk to me but when I spoke to his nurse, she said that that the family was bringing in his living will which specifically stated that he did not want artificial nutrition. The nurse was correct and to respect his wishes, we ended up sending him home with hospice and family.

In this case, there is one remarkable event and many commonplace ones. What happens to most of us as we grow older is that we lose some or all of our ability to swallow. Over time, we will all lose some muscle mass. As a normal effect of aging, it really shouldn’t be surprising when we find our elderly relatives choking on liquids or tough foods. In many cases, we can provide these patients with soft diets, artificially thickened liquids and maintain a good quality of life. If you live long enough, you will face these same challenges as well as others.

What was surprising about this case was that our patient had written down exactly what he wanted for his care. These documents may be called Advanced Directives or Living Wills. They provide your desires to your family as well as your medical team. We often do not have this documentation for our elderly patients. Why exactly do we not have this statement? The answers are slightly more complex.

1. Prepare for Resistance

I tried to have this conversation recently with both of my parents. While they are both in good health, I have three siblings and I want to know their wishes. My mom, a physical therapist, actually had a good idea of what she wanted done or not done. She was able to explain her views and rationale. However, my dad was completely silent on the issue (possibly for one of the first times in his life!). For him, this discussion was painful and difficult. He doesn’t want to think about his death and certainly not about his health declining. Even getting some very basic information was challenging.

I am sympathetic to the awkwardness and painfulness of these discussions. They make us face hard truths about our health and can create conflict in our families. In larger families especially, there have been huge legal battles on end of life care as well as shattered family relationships. In many cases, our patients and families have never had a frank discussion about their desires for care. This lack of planning creates conflict, guilt and resentment within families, and a potentially worsened quality of life for the patient.

2. We Don’t Have the Training or Expertise

Approximately 30% of Medicare spending occurs during the last six months of a person’s life. These costs may be spent on hospice or assisted living homes, but a significant amount occurs on “life-saving” treatments that are not life-saving. Families struggle to have these conversations and healthcare professionals do as well. We’re not trained on how to approach these subjects and struggle when families are resistant to discuss them.

One of the few places in the United States which has taken steps to solve the problems regarding end of life care is La Crosse, Wisconsin. Here, a

local medical ethicist began training nurses and other healthcare professionals on how to have these discussions and began to create end-of-life plans with patients. The result was that over 90% of the people who have died in that town have Advance Directives. The results of their efforts were so significant that the NPR podcast, “Planet Money” did a segment on La Crosse. Their efforts worked not because La Crosse is so different than the rest of the company, but the hospitals trained their staff and were persistent in their efforts. In interviews with nurses in La Crosse, they have a genuinely caring nature and are able to create relationships with their patients that can improve these discussions.

3. It Takes Time

These conversations are not easy to have. I have a great relationship with my dad and I am confident that we will be able to get an idea of what he wants, eventually. But it’s not going to happen in one conversation. And it shouldn’t. We can’t expect our patients to know what they want immediately. Our job is to provide them with the options available as well as the research and implications of each choice. We must put them in the position to make an educated choice. They will then need to take the time to think about their choices. They may want to do their own research or discuss their care with their families and friends. We then have to have these conversations again and sometimes multiple times before our patients know what they want. In many cases, we don’t have the time to have these in-depth conversations and certainly not multiple times.

Why and How Do We Fit In?

Why exactly do we need to be involved as dietitians? At some point in our elderly population, we're going to have make a decision about how or if we're going to provide nutrition. Often we have to make a decision on whether to provide "pleasure feeds," small meals that are designed for quality of life with the acknowledged risk of aspiration or providing nutrition support such as enteral or parenteral options. As dietitians, helping patients and families navigate their options is well within our scope of practice but we often enter the conversation too late in the game to have any significant impact. By this time, the patient and family may have already decided on a plan of care which is then difficult to change. Additionally, we often are not including the patient's desires in this decision-making process due to the extent of their illness.

As a medical profession, we need to start having these conversations earlier in life. A patient’s primary care doctor or nurse is likely the most appropriate person to fill out an advance directive with the patient but we can play a role as well. If we work in long-term care facilities, we should be working with patients and families as early as possible. Not only to build those relationships but to prepare them for the future and help to resolve ambivalence about their future plan of care.

In the hospital setting, we should work to identify patients with swallowing difficulties early and begin these preliminary discussions to determine their nutrition-related desires. We need to find or ask for training programs to improve our ability to discuss these issues with patients. By following the example of La Crosse, we can provide better patient care and an improved quality of life to our patients.