Patient and Caregiver Voices and Resources

Nine people who have faced serious illness either as patients or caregivers serve as consultants to our PCORI study on “expanding access to community-based palliative care.” Here we share some of the feedback these stakeholders have given us on a range of questions and concerns pertaining to palliative care delivery.

Recommended Books

Here are the palliative care-related books group members recommend reading:

Our student research assistants reviewed some of these books as well as palliative care-related videos. Check out their reviews below:

When Breath Becomes Air, book reviewed by Denisse

In the book When Breath Becomes Air, Paul Kalanithi shows us his life as he deals with stage IV lung cancer. He writes about his thoughts and emotions as he struggles to find the meaning of life in the face of death. He had been searching for this answer throughout his residency and the time he spent as a neurosurgeon, but it is at this point in his life that he truly begins to comprehend what being alive means.  No longer in the doctor’s role, Kalanithi experiences what it’s like to be the patient. Kalanithi gives us insight on how a person’s life can change when diagnosed with a chronic disease and what someone can decide to do in response to it. Although we see Kalanithi deal with difficult questions about his own mortality, he leaves the reader with wise words. Overall, this is a bittersweet book that is beautifully written. It gave me another perspective on life and left me thinking about what success in life really means. I wish he had talked more about his thought process when making difficult decisions.

Being Mortal: Medicine and What Matters in the End, book reviewed by Nikita

Dr. Atul Gawande’s “Being Mortal: Medicine and What Matters in the End” discusses palliative care and other forms of end of life care in depth. Gawande recounts his experiences as a surgeon and stories he hears from friends and family members about a loved one’s decline and eventual death. The book reports that everyone will inevitably die, and many in America do so from incurable diseases, chronic conditions, and frailty. In a society where health care advances have vastly improved people’s health, the aging population is rapidly increasing. Thus, Gawande explains that we as a society need to look into improving palliative and end-of-life care for the growing number of aging patients. His book is a must-read for everyone. His touching and eye-opening stories help shine a light on issues that are unavoidable and increasingly common. 

Extremis, film reviewed by Steve

“Call the police. They’re torturing a patient in the ICU.”

When you hear this line coming from a documentary it makes you think: “Where is this hospital, and why is this happening? little would they expect the hospital to be in the United States and the torture to be the life-saving treatment.

In the documentary Extremis, viewers confront an, issue not many have had to deal with: the responsibility of determining a loved one’s life or death.

Focusing upon Dr. Jessica Zitter, a palliative care specialist, and her team as they assist terminal patients prepare to die. These patients who have no hope of recovery, Selena who has stopped breathing on her own and has suffered severe brain damage due and Donna, a woman who has severe myotonic muscular dystrophy along with their families are the main interactions seen in this documentary. As the documentary progress tensions rise due to the different goals presented by Dr. Zitter, who uses logic to explain the reality of the situation as well as the impending death, and the patient’s families, who cling to slivers of hope their loved ones will persist.

As aging occurs there gets to be a certain point in which, the body can no longer sustain itself leading to the involvement of medical professionals to prolong and ensure the comfort of life. However, they can only do so much.

Often as one’s health continues to fail what used to be considered life-saving treatment has turned into nothing more than another form of torture. This change occurs when the pain and agony the patient is prolonged due to family sentiment, the hope of a miracle, or the fear of uncertainty. This amendment calls for discussion between the medical professionals and the patient’s medical decision maker, often full of grieving and arguing. To do what is right for the patient, however, this is a necessary step that must be performed so that the patients question whether they are pushing for treatment for themselves or the patient’s benefit. This documentary brings up a thought-provoking question, what would I do if placed in this situation?

Extremis, is one of those films that is tough to watch but necessary to truly care for your loved ones in their last moments. One of the main tensions seen in Extremis is Dr. Zitter’s effort to guide both her patients and their families toward the realization that recovery is not a viable option in this case. This often causes the good Doctor to have to have to cut through families last slivers of hope with logic and the reality of the situation as seen in the documentary. Zitter does not do this readily, however, as she consults other medical professionals and considers the possibilities before recognizing that the situation may be beyond hope. As extreme and painful as the doctor’s words can be it must be understood, that everything said is in the best interest of the patient.


Questions Group Members Have Addressed

  • What one or two services would you most like to have [provided by the palliative care team]?
  • What are you thoughts on encouraging palliative care teams to more formally assess caregiver needs?
  • How does the role of a social worker differ from that of a chaplain?
  • How do patients and caregivers like to be approached about palliative care for the first time?
  • What would you definitely not want to hear during your first introduction to palliative care?
  • What do you need to hear to be interested in palliative care services?
  • What do you need to know to understand palliative care?
  • How might palliative care services have made a difference to this couple?
  • What palliative care services could they have benefited from?