Learning From Hospice Patients on Their End-of-Life Journey

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Care Dimensions Hospice and Palliative Care Physician Anna Chon, MD, discusses care options with a patient.

I sat at the yellow-stained wooden dinner table, bumping against the edge of a sticky table mat, trying to muster the dexterity of my seven-year-old self to pick up each remaining grain of rice with my chopsticks. My parents were talking about Auntie Dorothy’s funeral.  I furrowed my brows at my dad as he said in a matter-of-fact voice, “I want you all to be happy when I die. There is no need to cry or to be sad.” I knew that if – I mean, when – he died, my father wanted us to be happy because he would be in a perfect place called Heaven. Since that time, I have often wondered how I would respond to death and dying.

 

How I came to hospice and palliative care

 

Eight years later while volunteering in the hospital as a high school student, I was awestruck by the privilege of being part of someone’s most vulnerable moments.  I was able to learn about each person and their story – where they had been, how they became who they are today, and what they hoped for. As I ventured into medical school, the sacredness of being entrusted with someone’s life became more apparent. One reason I chose to become a family physician was the opportunity to know my patients as people, to learn from their lives, to discover their values, and to help them achieve their goals. I have since realized that I can best learn about and care for people by helping control their pain and suffering as a hospice and palliative care physician.

 

Though modern medicine has achieved great miracles, none of us is exempt from the possibility of illness or the certainty of death. Regardless of our backgrounds, when in a state of physical or emotional suffering, we are vulnerable to a sense of helplessness and loss of control that can spiral into a sense of deep hopelessness. The health care system can be difficult to navigate and overwhelming for patients; as a hospice and palliative care physician, it is my job to help patients understand not only the limits of modern medicine, but also the power and autonomy they have over their bodies. I am privileged to be part of a profession that is helping change health care delivery by educating and empowering patients to make informed decisions with dignity.

 

We hospice providers have the humbling opportunity to infuse the dying process with peace, beauty and patient empowerment. In some cases, this means helping families understand what to expect and how to prepare for the end of life. In other situations, this means advocating for patients to have their requests and values honored – whether it is emphasizing quality of life, or prolonging duration of life. We help paint a realistic picture of what the future may look like so that patients and families can make thoughtful, informed decisions. Death is never easy to experience, but when an individual is able to choose how to spend his last days, weeks, or months — whether by creating lasting memories with his loved ones, or simply being surrounded by the things most cherished – it can be a beautiful process.

 

Bringing comfort and light through hospice

 

Many people who are not familiar with hospice and palliative medicine believe the field is bleak and dreary. On the contrary, a palliative approach to life and death can bring hopeful rays of light into dark and scary circumstances.

 

For example, I remember “Bob,” a WWII veteran on hospice who had wanted to see a Chinese acrobatic dance troupe perform, but he could not afford it. The hospice agency helped obtain tickets for him, and since Bob had no family to accompany him, his hospice nurse joined him. The performance was particularly important to Bob because he had regrets about how he treated the Japanese during his time in the service. After the war, he spent much of his life trying to find healing by seeking beauty and reconciliation with East Asian cultures.

 

The challenge of hospice and palliative medicine is to bring comfort to people’s suffering, even though there may be no hope for restoration to their previous health. In the children’s tale “Peter Pan,” J. M. Barrie writes: “To die would be an awfully big adventure.” I humbly, but boldly take hold of the challenge to journey with patients, and their families, as they embark on one of life’s biggest adventures: to live and die with grace and peace.

 

Discover how hospice can help people with serious illness make the most of every day

Care Dimensions

Anna Chon, MD, is a hospice and palliative care physician with Care Dimensions. She sees patients in their homes in Greater Boston, and provides palliative care consults at Beverly Hospital. Read her bio at: https://www.caredimensions.org/about-us/Physicians/physicians-anna-chon.cfm.

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"Since 1978, Care Dimensions has provided comprehensive and compassionate care for individuals and families dealing with life-threatening illnesses. As the non-profit leader in advanced illness care, we offer services in more than 90 communities in Eastern Massachusetts."