Palliative Care: A Different Kind of Hope

By Patrick J. Macmillan, M.D.

Palliative medicine is one of the greatest gifts we have to offer folks at the end of their life or during the chronic phases of illness. Patrick J. Macmillan, M.D., conveys that message loud and clear in this book featuring sixteen poignant stories of patients who found themselves at the end of life. Chaplains, nurses, social workers, and others play an important role in each tale. You’ll meet Grace, who wanted to keep fighting even though she had pancreatic cancer. Her family wanted her to keep battling as much as she did, but eventually she had to tell them that she didn’t want any more interventions. While doctors were unable to save her life in the conventional sense, they helped her spend her final days at home with loved ones. She is just one of many brave souls who have fought the good fight but eventually realized that surrendering to death offered their best hope at living with dignity.

• Language: English
• Publisher: Lulu Publishing Services
• Release date: Nov 14, 2016
• ISBN: 9781483459042

Book preview

Palliative

Care

A Different Kind of Hope

Patrick J. Macmillan, M.D.

Copyright © 2016 Patrick J. Macmillan.

All rights reserved. No part of this book may be reproduced, stored, or transmitted by any means—whether auditory, graphic, mechanical, or electronic—without written permission of both publisher and author, except in the case of brief excerpts used in critical articles and reviews. Unauthorized reproduction of any part of this work is illegal and is punishable by law.

Note: The stories contained in this book are about real encounters with real people. In cases where I have not gotten permission to write down the details of the encounter I have changed names to help avoid identification.

ISBN: 978-1-4834-5903-5 (sc)

ISBN: 978-1-4834-5904-2 (e)

Library of Congress Control Number: 2016915982

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Lulu Publishing Services rev. date: 11/02/2016

Table of Contents

Dedication

Foreword by Dr. Duc Chung

Introduction by The Author

Grace to Live By

Melinda: Death and Dignity

John Templeton Macmillan

Palliative Sedation: It’s Not What You Think

A Sister’s Love

A Lasting Relationship

The Door of Hope

Kris

Dr. Pepper

Father’s Day

The Miracle on the Mountain

How Much Time do I Have, Doc?

I Want to Die Now

DNR (Do Not Resuscitate) Does Not Mean DNT (Do Not Treat)

Beyond Measure

A Picture of Hope: Early Discussions of Palliative Care

What is Palliative Care?

Acknowledgments

References

Appendix A

About the Author

Dedication

To my Uncle Bob Mooney and my Mom,

Catherine Macmillan, who taught me the importance of laughter and the art of storytelling.

Foreword by Dr. Duc Chung

The journeys have been long and tiresome. The roads are windy and nebulous with uncertain endings. This is often the path of my patients as they confront their mortality. For many, it has been their third or fourth hospitalization in just a few months; for others, it has been multiple rounds of chemotherapy and radiation therapies and the side effects have become intolerable. Their bodies are weakened, their minds restless, and the patient and family have become despondent.

In hospice and palliative medicine, we are privileged to have the opportunity to journey with patients and families, to instill hope when hope is seemingly fleeting. Hope thrives on meaningful human interactions and relationships formed throughout these journeys.

* * *

At the VA clinic where I trained for my palliative care fellowship, I had the privilege of taking care of a seventy-six year old Vietnam veteran presenting with a sizable abdominal aortic aneurysm with high risk of rupture. Due to an extensive list of underlying comorbidities, including progressive dementia, the patient was referred to our clinic to address further goals of care. As I opened up the conversation, his wife related to me that they had been married for over fifty years and she had been her husband’s main caregiver as his dementia worsened. She noted that he enjoyed being around his children and grandchildren. He loved to cook and play board games with his family. These were the things that mattered most to him.

Mindful of this, the patient’s wife elected to pursue home hospice services. She believed that further surgical interventions would only invoke more pain and suffering.

A few months after that clinic visit, I received a warm phone call, expressing her gratitude to our palliative care team for helping transition to hospice. The patient passed away peacefully with his wife and children at bedside.

***

At our busy community hospital, I met a frail sixty-six year-old African-American gentleman. He had metastatic laryngeal cancer for which he received a tracheostomy and PEG tube to assist with breathing and nutrition. He had many underlying comorbidities, which made further aggressive medical interventions difficult. He had also been admitted multiple times to our hospital within a short time frame for recurrent pneumonias.

There was a lot of fear in his eyes when I first visited him with the inpatient palliative care team. Although he was not able to speak, he mouthed words and was able to make his needs known. He expressed many worries—worries for his wife and seven children, worries about his overall medical decline, and worries about where he would be placed after this hospital stay as he was previously homeless. But perhaps his worst fear was not having a voice.

I want to live, I recall him enunciating every word with conviction, his chest rising and falling as he spoke.

He slowly established trust and comfort with our team. He eventually opened up to us that he feared dying because he was afraid of leaving his family behind. He knew his body was not able to withstand more chemotherapy; he knew it was time to consider other options.

Throughout our two-week inpatient visits, he coped better with his own physical and emotional suffering. He would eventually elect for quality of life and comfort under hospice services at a nearby nursing facility. I will never forget the joy in his eyes on his last day at the hospital. I gave him a warm hug and firm handshake and said, I heard you loud and clear, to which he nodded an enthusiastic yes and smiled. Amidst the tears that fell from his face, I saw a glimmer of hope.

***

Highlighted above is a few clinical vignettes that attempt to highlight a different kind of hope that is ever present in the field of hospice and palliative medicine. The proceeding collection of stories by Dr. Patrick Macmillan, penned with raw human emotions, deeply honest in its revelations, seeks to further illuminate the power of hope in the care of patients with life-limiting illnesses. This hope is a transformative force that unites families, provides peace and comfort, and cultivates deep meaning in each human-to-human encounter in the field of hospice and palliative medicine.