Some Light at the End: Your Bedside Guide for Peaceful Palliative and Hospice Care

By Beth Cavenaugh

In this tender yet transparent guide to your final days, experienced hospice nurse Beth Cavenaugh reveals what options you may have as a patient living with a terminal disease. With personal stories and a touch of humor, Some Light at the End provides information about hospice care, the practicalities of the dying process, nursing guidance about pain and symptom management, and support for your loved one as they care for you along the way.

You'll discover:

• Questions to consider when researching palliative care or hospice care as you advocate for your health and wellness.
• Contemplations to maximize the quality of your life even at the end of your life.
• Guidance to prepare your affairs and assemble a trusted personal care team.
• Strategies to deal with common medical symptoms including medicine management and non-pharmaceutical techniques.
• Activities and meditations to encourage emotional healing and connection as you navigate your anxiety and grief.
• After-death care ritual ideas for your caregiver to honor you and your body with love while grieving their loss.

Ease into the end of your life with a plan, knowing you will be taken care of and your wishes respected. Read Some Light at the End for the empowerment you deserve in this final stage of your beautiful life.

• Language: English
• Publisher: Beth Cavenaugh
• Release date: Mar 1, 2021
• ISBN: 9781393753964

Book preview

Introduction

Hospice is the spiritual, emotional, and physical care of a human being at the end of their life. It is a privilege to be a hospice nurse—I get to see the best of humanity at a powerful time. I have witnessed deep love and honesty in relationships, families singing at the bedside, spiritual reckonings, much laughter, and messy tears. This can also be a time of great vulnerability because it’s unchartered territory; you have never done this before. I wrote this book specifically for patients who have just been diagnosed with a terminal illness. I want to provide you with some guidance, support, and information about what to expect and how to make thoughtful decisions about your care.

I was initially exposed to end-of-life care when my mom stopped chemo, signed up with hospice, and asked me to be her caregiver. My son, Jack, and I moved into my parents’ home for the last three months of her life. At age one, Jack didn’t have a lot to offer, except that he delightfully distracted my mom from her lung cancer. I didn’t have a lot to offer either, frankly. I was pregnant with my second child, tired, and unraveled. As a new nurse, this was my first step into the world of hospice, and I didn’t know how to best help my mom.

I now have 20 years of nursing experience with over a decade’s worth of hospice. I have walked alongside many, many patients, providing them with medical care and practical information while supporting them emotionally at the end of their life. With this support, patients can ease into the end of their life with more trust and clarity. Looking back to when my mom was dying, we had hospice support, but we were so clueless we didn’t even know what questions to ask. We could have used more guidance to help us understand this process, be better informed, and anticipate the unknown.

If you’re a patient who has just received a terminal diagnosis, you can still make decisions about your care, your life, and your death. I wish to reveal, with tenderness and transparency, what hospice can be in its best form so you can advocate for what you need and want. Even if you don’t choose hospice, you may benefit from the information here. I will walk you through what it is like to decline and eventually die, hoping to dissolve some of the mystery and shed some light at the end. When you know what to expect, you can make informed choices about everything: your caregivers, your relationships, your medications, and even your breakfast—ice cream sundae please!

At some point you will have family, friends, or professionals involved in your care. I have thought of them every step of the way, knowing they too can benefit from basic symptom management guidance, caregiving suggestions, and the dying process. When you are tired of searching for answers under the light blue glow of the internet or you are just plain exhausted, your caregivers can use this guidebook to help you. I have chosen to include some activities and meditations designed to encourage emotional care and connection to yourself and loved ones during this time.

My hope is that you can exit this world knowing you will be taken care of and your wishes will be respected. This is your journey—I want to honor you with candor and compassion. I want you to feel cared for, to be comfortable, and to have the empowerment you deserve in this final stage of your beautiful life.

—

When I worked as a hospice consultant, I would visit patients to explain the benefits of hospice care. One afternoon, I walked into Jenny’s hospital room. She was surrounded by her husband and three grown children, all of whom were shocked by her recent decline. I asked Jenny, How are you? She said, I’m tired. I haven’t slept in days because of my pain. I’ve been fighting cancer for two years and I can’t do this anymore. We discussed her fatigue and I gently told her, You can have a hospice nurse visit you at home three times a week, and a Home Health Aide can assist with your shower and light housekeeping a few times a week. You and your family can call us anytime day or night with any concerns.

Her disheveled husband looked slightly relieved. We talked about her pain and nausea and how hospice support may be able to assist her further. She said, Let me think about it. Come back tomorrow.

When I walked into her hospital room the next day, she was sitting next to the window, dressed, with her hair nicely combed. She said, I slept so well last night. I feel great. My daughter researched a clinical trial that I hope to pursue. I’m not interested in hospice. As I said my goodbyes and gave her a hug, she had a smile on her face and said, It was lovely meeting you, but I hope the next time I see you is in the vegetable aisle at the grocery store.

I will admit I am a fan of hospice. Over the years, patients and families have shared their relief and gratitude for this support. But I’m sharing Jenny’s story with you because I know hospice isn’t always the right choice for everyone or it may not be the right time. Or perhaps you don’t even know the questions to ask or the options available to you. Whether or not you choose hospice, I want this book to offer information that will help you make the right decisions for you.

Chapter 1:

Hospice Basics

When a patient hears the words, We have done everything we can…, or Now is the time for hospice…, most people cannot breathe, let alone think clearly, ask critical follow up questions, get support, do some research, and weigh the pros and cons. You may have been wondering how you were going to stumble out of the doctor’s office safely, let alone get into a car. Or maybe you were driving on the freeway like my friend when she was told she had breast cancer. She had to pull into the hardware store parking lot to breathe. Take the time you need to center yourself.

If a physician said that you may benefit from hospice support, now is the time to gather information, clarify, and make some decisions about your care and your life. The doctors generally don’t throw out the H word (hospice), unless there is a significant change in your health and you are declining, so if you are unclear, let’s get some answers. Schedule another doctor’s appointment or phone call once you have had a good night’s rest and when you are in a more grounded state. Grab a notebook and a supportive friend or family member. Here is some basic hospice information so that when you have your meeting you can be better prepared.

Are there criteria to be a hospice patient?

Oh, yes. Most hospice programs follow the criteria set by Medicare (because the Medicare hospice benefit is the main funder for hospice). These guidelines are very strict and very specific. This is generally how it works.

A doctor must refer you to hospice. This can happen in many ways. In Jenny’s case, her oncologist recommended hospice after all her treatment options were exhausted. An emergency department physician may recommend hospice after your ninth visit to the ER with no response to your usual medical therapies. Or you or your family can initiate this conversation with your primary doctor if you feel like you are not doing well and the quality of your life has significantly diminished. This referring doctor will need to believe, in their best medical judgment, that you likely have six months or less to live if you let your disease run its natural course.

You must meet criteria for hospice. The criteria are specific to your disease process or diagnosis and generally defined by