Patients and their caregivers can navigate a terminal cancer diagnosis while keeping dignity intact.
As much as patients, their families and their caregivers want their cancer journey to take an overall positive trajectory, sometimes the odds are against them. This can set everyone’s mind racing with worries about what they need to take care of in their lives and how to remain as comfortable as possible as they reach the end of their lives.
Dr. Kashyap Patel, CEO of Carolina Blood and Cancer Care Associates in Rock Hill, South Carolina, and vice president of the Community Oncology Alliance, recently published the book “Between Life and Death: From Despair to Hope,” which focuses on his and some of his patients’ experiences as they come to terms with death.
“Patients don’t mind accepting the conversation about (dying),” Patel told CURE®. “What they don’t like is losing control. The happy medium of accepting (death) comes from being very transparent about our ultimate goals.”
In the book, Patel wrote about his experience with Harry Falls, a retired military pilot-turned-hang glider who received a diagnosis of stage 4 cancer. Patel and Falls formed a relationship that lasted until Falls died. Patel took notes of their meetings to formulate this collection of discussions.
“I thought if I can make this a conversational piece, jotting down my experiences with Harry and how I was able to prepare him (for death), I felt it probably may help many of my colleagues as well as patients to be ready for this conversation.”
Patel also detailed his time with another patient, Annie Carlson, a theater artist who received a diagnosis of advanced breast cancer in her mid-20s.
Both patients’ experiences with Patel highlight the importance of these connections with their health care teams during a terminal cancer diagnosis. Patel recommends that every patient or caregiver ask their oncologist very candidly about their life expectancy, which can sometimes be a frightening conversation, but can give a patient the chance to take control of their life.
“The (conversation after that) would be that ‘I want to live as long as I can, but I don’t want to lose my quality or dignity of my life,’” Patel said. “Life is all about balance ... allowing patients to have the liberty of conversation with the physicians that, ‘Please be honest with me, please make sure that you respect my cultural, spiritual or personal belief of how I want to be in control and how I want to leave this world with my terminal illness.’ I think that will alleviate lots of suffering.”
The end goal is not looking for a cure, but rather accepting that the advanced-stage cancer will be a life-limiting event, Patel said. He also emphasized the significance of focusing on quality of life during this time.
“How can we from now until the day (you die) maximize your presence on Earth for you, for your loved ones and for (people’s lives) that you can make a difference in?” he said.
Not only are patients a part of this process, but so are their caregivers, who play “a very vital role,” Patel said. Caregivers can offer patients the support and love they need to go through this time in their lives, which can include completing a bucket list with trips and activities the patients always wanted to do.
“In time, whatever time is left, we can make that person feel most relevant,” Patel said.
Caregivers can also empower the patient to “let go” during a time that can be the most frightening.
“Gently holding the hand and whispering in the ears of the loved one that we give you permission to move on wherever you’re heading, it’s actually quite soothing,” Patel said.
“The caregivers can be there to enable the patient who’s been going through these challenges of ensuring that whatever could be fulfilled within the narrow time frame can be achieved and accomplished.”
Patel added that we are mortal creatures, but it is up to all of us to decide whether we hide in a constant fear of death or accept it since it is inevitable.
“Accepting, compromising ... and living in equanimity — I call these three a foundation of being happy,” Patel said. “Accept what comes your way, compromise with what you have and make it to the fullest where you can have a quality of life combined with longevity if you can and then leave your life in equanimity so that you are not losing (the) pure emotional struggle by the fear of death.”
For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.