What Does The End Look Like?

We often get questions about what it might look and feel like at the end of life for someone with ILD. There is no better way to shed light on these issues than from caregivers and patients themselves. There are some helpful documentaries that can be helpful in framing and guiding these questions.  

  • End Game - follows the stories of three medical providers in San Francisco who challenge the way we think about living at life's end (currently available on Netflix at https://www.netflix.com/title/80210691).
  • Defining Hope - follows people with life-threatening illnesses at the end of their lives and the choices we forget we have in deciding how we die (more information at https://hope.film/)

As the end of life approaches, there may be changes that happen over days...or weeks. Each person's experience is unique. The following are some of the symptoms you may experience. It is important to communicate changes in your symptoms with your healthcare team. Your pulmonologist or hospice physician can give you more details and you should be in constant communication with them as the end of life approaches.

  • decreased appetite and difficulty swallowing.
  • loss of energy, the ability or desire to talk, and withdrawing from family and friends
  • feeling sleepy or drowsy most of the time, being very inactive and eventually becoming unconscious. It is not unusual to stay in bed or a comfortable chair rather than getting up
  • changes in breathing rate or pattern. As the body becomes less active, the need for oxygen reduces. There may be long pauses between breaths and the tummy may move up and down more than the chest. There may also be an increase in chesty or respiratory secretions and noisy, moist breathing that occurs because of a build-up of phlegm that can’t be coughed up. Remember, this might be more distressing for others than for the person affected. Medication is available that can help to dry up the phlegm
  • needing oxygen, if it’s not already being used, and the support of other medical equipment. This doesn’t need to get in the way of physical contact. Don’t be afraid to touch and be close to each other
  • changes in skin color and temperature. Skin may become pale, moist and slightly cooler just before death
  • involuntary twitches. These are normal and don’t mean that someone is distressed or uncomfortable

For more information, please contact your palliative or hospice care team for more information. 

In the final hours and days, death from serious illness doesn't follow a constant, uniform path, but it has common signs. Knowing those signs, understanding how the end may unfold, is important in easing stress and worry.

Steven Pantilat, MD
Professor of Medicine

Founding Director of UCSF Palliative Care Program