Understanding Fatigue at the End of Life

Join SevenPonds each month as Tani Bahti, RN, CT, CHPN, offers practical on-hand guidance to demystify the dying process. An RN since 1976, Tani has been working to empower families and healthcare professionals to have the best end-of-life experience possible both through education and the development of helpful tools and resources. The current Director of Pathways, Tani is also the author of “Dying to Know, Straight talk about Death and Dying,” considered by SevenPonds as one of the most practical books on the topic. Founder Suzette Sherman says this is “the book I will have at the bedside of my dying parents some day, hopefully a very long time from now.”

“Dad wants to stay in bed, but I think he has to keep walking like he always has. I keep pushing him to get up and build his strength back, and we are starting to argue about this. I fear he is giving up and I can’t let him.”

Near the end of life, a person’s ability to participate in usual activities of the past declines. This can create fear for the family and result in conflict, since people are used to a lifetime of “building up” after being struck with any infirmity. When a person says he can no longer do those activities, the family may think he is giving up, resisting or even seeking to hasten his decline. These beliefs, coupled with the grief over this loss of participation, can drive many to push their loved ones beyond what their bodies can do.

When facing the end of life, many changes happen at different rates and times, depending on the cause of the decline. Only the individual inside that body knows what he can and cannot do, and must be considered the “expert.” To promote the comfort and dignity we seek, we have to honor their limitations, lest we inadvertently increase their fatigue and discomfort by pushing them beyond their means.

To promote the comfort and dignity we seek, we have to honor their limitations, lest we inadvertently increase their fatigue and discomfort by pushing them beyond their means.

Here’s a simple test: check your loved one’s pulse. The average heart rate is 60-70 beats per minute. Often, the pulse of the person who is weakening may be 90, 100 or even 120. This is the heart rate of someone who is running a marathon. Because blood pressure may be lowering, the heart is working extra hard to keep the body running as it had been. Even though they are “just lying there,” it’s like your loved one has been running for days without rest. He is exhausted.

For others, the heart rate or blood pressure is lowering and unable to match the need of the body if it attempts to be active. In both cases, the body does not have the reserve necessary for even getting into a chair.

When you know this, it’s easier to understand that forcing him to get up will be even more fatiguing, and in fact, take away the precious little remaining energy you would otherwise enjoy through talking, reviewing photos and the like.

Increased fatigue also means increased sleep.

Although natural and normal, it’s experienced as a loss for the family since they have fewer meaningful interactions. There may be a fear of too much medication (although this process occurs even with those who take no medication at all). We wish for the Hollywood deaths when the person is coherent and can communicate meaningfully seconds before death. In real life and death, that is usually not the case.

That means the person essentially dies in his sleep.

The comforting news in all this is the fact that at the end of an illness or old age, a person naturally does less, sleeps more, and finally goes into a coma as the body continues to shut down.

That means the person essentially dies in his sleep.

Isn’t that what we often wish for ourselves?

Take a look at a copy of Tani’s book “Dying to Know, Straight talk about Death and Dying” to help demystify the process and offer words of wisdom on the many aspects of dying.