Copyright © 2017 DEBORAH DOOLER
ISBN-13: 978-1979369954
eISBN: 978-1772772029
ISBN-10: 197936995X
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The purpose of this book is to educate and entertain. The author and/or publisher do not guarantee that anyone following these techniques, suggestions, tips, ideas, or strategies will become successful. The author and/or publisher shall have neither liability nor responsibility to anyone with respect to any loss or damage caused, or alleged to be caused, directly or indirectly by the information contained in this book.
Medical Disclaimer
The medical or health information in this book is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. This information is not intended to be patient education, does not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment.
10-10-10 Publishing
Markham, ON
Chapter 1: How You Can Use The Book on Home Hospice: Living and Dying in Comfort with Dignity
How you can benefit from The Book on Home Hospice: Living and Dying in Comfort with Dignity
Citations for you
Resources for you
Special considerations for children and adolescents
Suggestions for things you can do to bring comfort and dignity
Start the discussion about death and dying - Interesting facts about death
My notes, thoughts, questions, and next chapter
Chapter 2: Home Hospice - Let’s Take Your Journey Together
The evolution of end-of-life care in the home
Coming to terms with a terminal diagnosis
The fear of death and dying
Home sweet home - Choosing to be cared for in the comfort of your own home
Suggestions for things you can do to bring comfort and dignity
I don’t know what to say - The etiquette of illness
Special considerations for children and adolescents
My notes, thoughts, questions, and next chapter
Chapter 3: Your Circle of Care
The philosophy of home hospice care
Professional caregivers - Bringing comfort and dignity to you at home
Loved ones as caregivers
Advanced care planning - Expressing your wishes
Suggestions for things you can do to bring comfort and dignity
My notes, thoughts, questions, and next chapter
Chapter 4: Relief of Common Symptoms of the Body
How to recognize and relieve physical suffering
Fatigue, drowsiness, lethargy, and weakness
Swelling, edema, and lymphedema
Skin and wounds
Urinary and sexual symptoms
Suggestions for things you can do to bring comfort and dignity
My notes, thoughts, questions, and next chapter
Chapter 5: Medical Emergencies
Opioid toxicity and opioid overdose
Superior vena cava syndrome
Spinal cord compression
My notes, thoughts, questions, and next chapter
Chapter 6: Relief of Common Symptoms of the Mind
How to recognize and relieve emotional suffering
Depression and withdrawal
Agitation, delirium, confusion
My notes, thoughts, questions, and next chapter
Chapter 7: Quality of Life - Living Life to the Fullest
Complementary and alternative therapies
Mindfulness practice
Spirituality and religion
Community Support Services and legacy work
Suggestions for things you can do to bring comfort and dignity
My notes, thoughts, questions, and next chapter
Chapter 8: What to Expect at the End of Life
Terminal sedation versus medical assistance in dying
Last few months and days
Residential inpatient hospice
What to expect in the last few days and hours
How will I know when my loved one has died?
What to do next
My notes, thoughts, questions, and next chapter
Chapter 9: What to Expect After Death
Contacting family and friends
Minors and dependent adults
Dealing with social media and online accounts
Managing email accounts
Religious or spiritual organizations
Funeral arrangements
Financial and legal obligations
My notes, thoughts, questions, and next chapter
Chapter 10: Life After Death - Moving On
Bereavement, grief, and mourning
Special considerations for children and adolescents
I don’t know what to say to the grieving
Special considerations for children and adolescents
Moving on - giving back life after death
My notes, thoughts, and questions
About the Author
I dedicate this book to my cousin, Maxine Gopsill Small, who died from cancer way too young. She faced every day with courage and laughter. She was the strongest person I have ever known. She has been an inspiration to me and is loved and missed by many.
I also dedicate this book to you, the reader, and to all the people you hold near and dear. You are the true star of this book, whether a recipient of care, a caregiver, or healthcare angel. You are the everyday heroes who make this world a better, more compassionate place to be. My wish is that your journey be filled with love, light, comfort, and dignity.
I consider myself to be an old-fashioned country doctor in many ways. I come to your home with my black medical bag, I sit at your bedside, and I hold your hand and offer comfort and support in your last months, days, and hours. I laugh with you, and I cry with you, but most of all, I listen. I look into your eyes and ask how you are feeling today, and what it is that is most important to you. I want to know about your wishes and your hopes and dreams for the future. I am only a small part of the home hospice team; we are all here to support and offer hope to those who are dying, and to their families.
I see you at your best and at your worst. You don’t need to get dressed for me. I will see you where you are, whether that is at the kitchen table or in bed. You are the star of the show; it is your life and your journey. I have written this book to offer you some valuable information, and share my experiences of caring for people at the end of life in their home.
It is a true privilege to be welcomed into your home. I feel truly blessed to be able to do what I am passionate about and love: to provide comfort to those in need.
My hope is that you will read this book and feel empowered to ask for and, if need be, demand that you receive home hospice care in your area. I cannot be there personally for everyone, but it is my belief that we all deserve to have access to quality home hospice care.
I send much love and blessings to you, the reader.
Dr. Deborah Dooler
Palliative Care Specialist
Award Winning Author
The Book on Home Hospice: Living and Dying in Comfort with Dignity by Dr. Deborah Dooler is written to help you understand what it means to be diagnosed with a terminal illness. It offers practical suggestions to help you or your loved ones to manage care in your own home.
This book is an excellent resource, whether you or a loved one has been diagnosed with cancer, COPD, heart failure, ALS or any other life-limiting illness. At this difficult time in your life, The Book on Home Hospice: Living and Dying in Comfort with Dignity offers you valuable information on coping with a terminal illness, including managing the physical, psychological and spiritual challenges that you or your loved ones may be struggling with. It also offers you insights into the complexities and great rewards of home hospice care. You will find the book to be the most comprehensive resource on end-of-life care in the home. It can be used as a manual and journal on your journey.
Dr. Deborah Dooler is the authority on home hospice care, and she brings her vast knowledge and experience to you. Her passion for helping you to cope with trauma and loss is evident in every chapter of the book. Her book deals with death and dying in a compassionate and straightforward manner. Having met Dr. Dooler in person, I know her to be a tireless advocate for providing compassionate palliative care in the comfort of your own home.
This book contains a great deal of wisdom, and I highly recommend you read it. I found it to be an inspiration, and I am sure you will too.
Raymond Aaron
New York Times Bestselling Author
Thank you to my husband, John Dooler, for your unconditional love and unfailing support for everything I do. Thank you for all the hours you have spent proof reading this book; you have made it so much better than I ever dreamed it would be. I love you. You are my true soulmate.
Thank you to my children, Rick, Amy, and Johnathon Dooler. Having you in my life has been my one true success. I am so proud of the beautiful, loving, successful people you have become. I love you with all my heart.
I would like to offer a special thank you to my parents, Kathy Nock and John Nock. Without you, I would not be the person I am today.
I wish to say thank you to Joan Clover and Alan (Bunny) Clover for always supporting me and cheering me on. Your kind and caring nature has been an inspiration to me.
I would like to say an enormous thank you to my colleagues and friends on the South Niagara Palliative Care Team (aka Southern Comfort):
Sue Battersby-Campbell, NP - You are a force to be reckoned with, and I could not do it without you. You are a true expert in the field of palliative care.
Susan DeCicco - I am blessed to have you in my life. Your compassion and willingness to go above and beyond to help people is truly inspirational.
Petrusia Mulholland - You make my life so much easier. You are an amazing woman, and I am glad you are on my team.
Clarence Braun - Clare, you have been with me from day one. You carried me when I couldn’t walk, and you heal my soul on a daily basis. Thank you for all you do.
Sandra Deaves - I am in awe of your compassion and resilience. Your work with children and their families has made you a perfect addition to our team.
Joanna Mataya - Thank you for your tireless efforts and support to the teams. You insulate us so we can do our work. It is greatly appreciated.
I would like to offer a special thanks to retired Dr. Maria Becker. You have made me a better and more mindful doctor and person. I am forever in your debt.
Thank you to Hospice Niagara, especially Carol Nagy, for your ongoing support and wisdom to the teams of Niagara. Thank you for advocating for better palliative care services for all. A special thanks to Tina Van Egmond for your contribution to Hospice in the Niagara region.
I would like to thank you, Raymond Aaron, for your kind forward in the book. I would like to express my gratitude to you for inspiring me to become an author. Attending your events has opened my heart and soul in a way that I never thought possible.
A special thank you to Barbara Powers an exceptional book architect for your kind help and wise words.
Thank you to Jack Canfield; you have been an inspiration to me. What I have learned from you has made me a better author and a better human being.
I would like to offer a special thank you to all the patients and their families who have allowed me into their lives at such a difficult and challenging time. I am inspired and awed by your love and support for what I do; thank you.
Finally, a huge thank you to all the dedicated home palliative nurses and care coordinators who are working at the bedside, providing compassionate care to offer comfort to the dying, on a daily basis:
Brenda Sinan, Cindy Perry, Colleen O’Gorman, Dawn Brown, Dennis D’Uva, Donald Aedy, Jungok Seo (Jade), Jocelyne Molnar, Kelly Karner, Kim Bradshaw, Kim Gatt, Kim Wells, Laurie Andrychuck, Linda Serre, Meighan Truant, Nora Johnson, Paola Lawrence, Prince Gwanzura, Shari House Comeaux, Tracy Earick, Trina Lemay.
I truly admire what you do. You are true healthcare angels and a blessing to know.
Chapter 1
How You Can Use The Book on Home Hospice: Living and Dying in Comfort with Dignity
The act of dying is one of the acts of life.
Marcus Aurelius
How you can benefit from The Book on Home Hospice: Living and Dying in Comfort with Dignity
I have written The Book on Home Hospice: Living and Dying in Comfort with Dignity as a resource and companion for people who may be experiencing the shock, pain, and sorrow of being diagnosed with a life-limiting, terminal illness, and for their families, caregivers, loved ones, neighbours, volunteers, and anyone else with an interest in providing comfort and dignity to those in need at the end of life. This chapter will introduce you to the structure and form of the book, and what topics will be covered in the following chapters.
The information in The Book on Home Hospice comes from my own personal medical practice within the hospital and community settings. As a palliative care physician, practicing, teaching, and lecturing in the Niagara Region, I have had the privilege of working with thousands of people and their families facing the end of life, over the years. I have been inspired and awestruck with the resilience and compassion of the human race. It is an inherently human trait to protect and care for the most vulnerable in our society. Death, as is birth, is a process to be shared and experienced with loved ones. It is their heroic bravery in coming to terms with their terminal illness that has inspired me to write this book. My hope is that it will help you to come to terms with the meaning of your diagnosis and help you to understand the normal process of dying, and the enormous benefits and challenges of choosing to stay in your home at the end of life. It can be one of the most rewarding and satisfying experiences for you and your loved ones, as long as the appropriate support services are in place.
As you take this journey with your family and caregivers, it can be a deeply spiritual time, full of reflection but also fear and worry about the physical and mental changes that will affect you and your whole family.
The Book on Home Hospice will help you to become familiar with the home hospice experience, as well as with those caregivers who will be in your circle of care. This includes professionals and loved ones, assisting you with planning and preparing for those practical things, such as preparing legal documents, home care set up, and safety. It will address concerns regarding the relief of common symptoms of the body: pain, breathing, energy, gastrointestinal, urinary and sexual tracts, and of the mind: depression, anxiety, confusion, agitation, and delirium. The book addresses medical emergencies, such as opioid toxicity and opioid overdose, bleeding, convulsions, superior vena cava syndrome, and spinal cord compression. As equally important to the physical and mental strains and challenges are the spiritual and religious. The Book on Home Hospice will discuss spirituality and religion as it pertains to you. There are suggestions for you to integrate mindfulness practice and legacy work.
The Book on Home Hospice discusses what to expect at the end of life, with an introduction to the differences between terminal sedation and medical assistance in dying. Descriptions of what to expect in the last few months, few days, and few hours are meant to educate and enlighten you with the hope to alleviate some of the fear and worry of the unknown. There will be suggestions for coping with death and what to do next. The final chapter will discuss life after death, dealing with grief and bereavement, and moving on.
The Book on Home Hospice is meant to be used as a starting point to introduce some very difficult topics of conversation.
The Book on Home Hospice need not be read from front to back; please feel free to look at the chapters and subchapters, and choose a topic that is relevant to you at the time. Although written in a sequential way, each chapter and subchapter can stand on its own. I understand that, at times, you may be overwhelmed and exhausted; therefore, I recommend digesting the information in small bursts, or as questions may arise. There may be topics that are not pertinent to your situation—I suggest that you may want to skip these sections, with no guilt or regret. This book was written for you, and I truly hope you find it to be valuable and informative.
Citations for you
Citations can be found at the very back of The Book on Home Hospice; I have used the most up-to-date and relevant information available at the time of publication.
Resources for you
Throughout The Book on Home Hospice, you will find some helpful definitions. It can be challenging to navigate the world of medicine, and I hope these definitions are helpful to your understanding of the process of living with a terminal illness and dying at home.
Special considerations for children and adolescents
Many of the suggestions in The Book on Home Hospice may hold true for children who are dying, but due to the complexity and specialization of dealing with the death of a child at home, it is out of the scope of this book. However, as children are an integral part of our lives and family structures, it is imperative to include them in the conversation regarding the process of dying and the death of their loved ones.
Throughout The Book on Home Hospice, you will find the teddy bear icon for suggestions of how to approach and support children and adolescents through their journey. It is important to introduce the idea of death, to children, as an everyday part of life; this could include discussions regarding the death of a plant or a dead bird, or the dying of a beloved pet. A child’s experience with the death of a loved one can be extremely difficult, for the child and the adults around them. A child’s grief can be underestimated; it may be difficult for them to express their feelings. Death can be difficult to understand at any age; and regardless of age, all children grieve.
I have added a list of resources, books, videos, and organizations that may be helpful. Throughout The Book on Home Hospice, there are tips and suggestions to help children understand, express, and cope with their emotions and fears. In the chapter on grief, children’s bereavement responses at different developmental stages, and risk factors for complicated grieving, will be discussed.
For concerns regarding the well-being of your children, please refer to the child’s family physician or pediatrician for ongoing advice. Your local hospice is an excellent resource with programs available to help families cope, as well as your local family and children’s services center.
Suggestions for things you can do to bring comfort and dignity
In the last subchapter of each chapter, I have provided suggestions for you to provide comfort and dignity for either yourself or someone you care about. You will find tips on safety, symptom management, planning, and support at the end of the chapters. My hope is that they will help your experience at home to be more peaceful and comfortable.
Start the discussion about death and dying: Interesting facts about death
Did you know?
When Thomas Edison died in 1941, Henry Ford captured his dying breath in a bottle.
To start the discussion about death and dying, I have provided some interesting facts about death throughout The Book on Home Hospice. The purpose is to make you feel more comfortable thinking and talking about death as a natural part of life. Dying is something we human beings do continuously, not just at the end of our physical lives on this earth. [18] Every minute, 35 million of your cells die; death is not a failure of life but a part of it.
It is as natural to die as to be born.
Francis Bacon (1561-1626) British statesman and philosopher
To make The Book on Home Hospice your own, I encourage you to highlight the things that are important to you, and to use this as a starting point for opening dialogue with your family, friends, and caregivers. It is through open and honest communication that you can truly begin to work through the stages and processes of living and dying, with comfort and dignity, on your own terms.
Many recent studies have shown the importance of initiating a palliative approach to care at the beginning of a terminal diagnosis, as palliative care and ongoing treatment can go hand-in-hand. Early initiation of palliative care can lead to a more comfortable and often longer life, enabling you to stay in your home and avoid hospitalizations. I have seen the effects firsthand of offering symptom relief along with psychosocial and spiritual support to relieve suffering. With symptoms resolved and stress relieved, the body is often more capable of moving through the phases of grief, from denial and anger to acceptance and peace. Unfortunately, the word palliative care, or end of life care, has many negative connotations for people, which in fact provides a block to providing excellent pain and symptom management, and complete patient and family care.
According to the Canadian Hospice Palliative Care Association, hospice palliative care programs allow patients to gain more control over their lives, manage pain and symptoms more effectively, and provides support to family caregivers. [4]
Notes, thoughts, questions, and next chapter
Hospice palliative care aims to:
Treat all active issues.
Prevent new issues from occurring.
Promote opportunities for meaningful and valuable experiences, personal and spiritual growth, and self-actualization. [4]
You will find, at the end of each chapter, a place for your notes, thoughts, and questions. Please feel free to use your book as a companion on this, your journey, and take your book with your questions to your care providers to help start those difficult conversations. I highly recommend that you write down any ideas, questions, thoughts, and reflections that may be important to you. I encourage you to keep an open mind to the options that are available to help keep you comfortable and prepared for your journey.
In Chapter one, you have looked at some of the important topics that will be introduced in the following chapters. I hope that this chapter has shown you how the benefits of a palliative care approach can assist you in living and dying in comfort, and with dignity, in the setting of your own home. In the next chapter, you will learn the evolution of end-of-life care in the home; some strategies to begin to come to terms with your diagnosis and fears; how to re-frame hope; and how to begin the process of planning to stay home.
I thank you for choosing The Book on Home Hospice: Living and Dying in Comfort with Dignity, and I welcome you on this journey of discovery.
Now, let’s get started!
Deborah Dooler, MD CCFP (PC) Palliative Care Physician
The best and most beautiful things in the world cannot be seen or even touched; they must be felt with the heart. Helen Keller (1880-1968) deaf/blind author and activist
Chapter 2
Home Hospice - Let’s Take Your Journey Together
How people die remains in the memory of those who live on.
Dame Cicely Saunders, founder of the modern hospice movement
The Book of Home Hospice offers a comprehensive look at the philosophies and practical applications of providing care to those with a life-limiting illness, their caregivers, and support people as they journey together in their home. As the founder and medical director of the Niagara South Palliative Care Outreach Team, I have had a great deal of experience caring for palliative patients in the home. Working with the multidisciplinary team to assist people come to terms with their diagnosis, transition through the stages of grief, and maintain hope and ultimate acceptance and peace at end of life has been one of the most rewarding experiences of my life.
This chapter will give you an introduction to the history and evolution of end-of-life care in the home, from medieval times to modern day. It will help you to understand the stages of coming to terms with a terminal diagnosis, including denial, anger, bargaining, depression, and acceptance, as first described by Elizabeth Kubler-Ross, in 1969. It will introduce strategies to help you maintain and re-frame hope, and begin to make the necessary planning and preparations for staying at home.
Some helpful definitions:
Palliative care (also known as hospice palliative care, and end-of-life care) - The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering, by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.” [4]
Did You Know?
There are over 200 euphemisms for death in the English language. [12]
Some common euphemisms for death include:
• Fading quickly •Kick the bucket •Brown bread (cockney rhyming slang)
• Deceased •Departed •Demise •Expired •Gone to a better place
• Passed away •Passed on •Checked out •Bit the big one
• Bitten the dust
• Popped their clogs •Pegged it •Taken to Jesus •Met his maker •Turned their toes up
• Cashed in their chips •Fallen off their perch •Croaked • Given-up the ghost
• Gone south •Shuffled off this mortal coil (from William Shakespeare’s Hamlet)
• Pushing up daisies • Sleeping the big sleep •Checking out the grass from underneath
• Six feet under • the last breath •Paying a debt to nature
Hospice palliative care