In recent months there has been a lot of discussion and debate about the idea of dying with dignity, spurred by the story of Brittany Maynard's choice to end her life while she still had control, rather than continue the progressive suffering caused by her brain tumor. Proponents of Death with Dignity laws suggest that terminally ill patients should be able to "hasten an inevitable and unavoidable death" and thereby preserve their dignity by being able to control the timing and manner of death.
While everyone seems to agree that the dying process should indeed maintain a patient's dignity, there does not seem to be a clear definition of what dignity actually means at the end-of-life. Is taking control over the timing and manner of death all that is necessary to instill dignity in the dying process?
Dr. Harvey Max Chochinov, a professor of psychiatry at the University of Manitoba and Director of the Manitoba Palliative Care Research Unit, has identified in his research six primary factors that affect dignity for those who are dying: pain, informal support, formal support, hopelessness/depression, heightened dependency needs, and quality of life.
What will it take to ensure that you will die with dignity when you reach the end of your own life? Using Dr. Chochinov's six factors as a framework let's look at some choices and actions to take right now in order to foster dignity for yourself when your life is reaching the end:
1. Pain: Practice pain reduction techniques
While pain management is one of the most important functions of a hospice/palliative care team, the patient can augment the relief provided by their medications with certain techniques that lessen the intensity of pain, such as music therapy, guided imagery, prayer or meditation, and EFT (Emotional Freedom Techniques.) Use of these modalities can enhance resilience and coping skills, as well.
If you learn these techniques now they will help you manage the pain you encounter in your day-to-day life and they also might prove useful at the end-of-life. By practicing with the pain you experience now you will learn how your own body and mind respond to pain and may discover which techniques work best for you. In addition, regular practice of one of these alternatives will train your brain so that the technique will be easier to initiate and more effective when it is needed in a crisis situation.
2. Informal support: Foster your relationships with loved ones
If you end up needing home-based care at the end-of-life, your caregiver will most likely be a family member or close friend, unless you can afford to hire a private nursing staff. By focusing now on healing old resentments, practicing forgiveness and strengthening the bonds of unconditional love with those people closest to you, you will lessen the tension in those relationships long before you need to rely on them for supportive care.
Building bridges of love to the people closest to you now will help you avoid two of the biggest obstacles Dr. Chochinov found to attaining dignity at the end-of-life: "Not being treated with respect or understanding" and "feeling a burden to others." In my own hospice experience, when relationships have been based on mutual respect and love over the years, the burden is lessened for everyone, caregiver and patient alike, during the dying process.
3. Formal support: Promote hospice and palliative care in your community
The best way to ensure that quality care will be available to you at the end-of-life is to become active in your community right now in promoting hospice and palliative care. Learn about the resources in your area, offer to serve on a board, help with fundraising, or become a volunteer for your local end-of-life care providers. If you are lacking certain services in your area form a task force to improve end-of-life care and encourage local medical providers to get involved.
4. Hopelessness/depression: Find meaning in your life
Viktor Frankl wrote in Man's Search for Meaning, his classic story of life and death in a Nazi concentration camp: "Those who have a 'why' to live can bear with almost any 'how.'" To counteract the feelings of hopelessness and depression that can rob you of dignity at the end-of-life, it is imperative that you begin your own search for meaning in life right now. Perhaps you have never thought about the purpose of your existence before, but it is far better to begin looking at that question now than to wait until you are on your deathbed.
Spend some time in contemplation, identify what really matters to you in life and then create a daily practice that will support your search for meaning. You may want to try journaling, meditation, prayer, yoga, mindfulness, or a combination of some of those practices. It doesn't really matter what you practice -- only that you practice with consistency and diligence. Having a daily practice helps calm anxiety and creates opportunities for deeper contemplation and inner work, which will lead to a greater sense of meaning in all of life.
5. Heightened dependency needs: Learn to let go of expectations
One of the greatest challenges for any patient is to accept the reality of becoming increasingly dependent on others for the basic activities of daily living, including bathing, grooming, eating, and using the toilet. The fear of giving up autonomy and independence is so great for most of us that we resist even thinking about the possibility.
But the reality is that unless you die at a younger age of a non-illness-related cause, then you will end up being dependent on the intimate care of others at the end-of-life. To prepare for this challenge you must learn to let go of your expectations and accept whatever life brings to you. You will need to practice surrender by remembering each day that you are not really in control of life, you do not have all the answers for things that happen to you, and you waste your precious energy when you try to force life to be other than it is. Practice deep breathing to stay calm during this process of gradually letting go of your attachments and expectations.
6.Quality of Life: Develop a spiritual practice
Multiple studies have shown that quality of life at the end-of-life is enhanced for patients who have a strong sense of spiritual well-being, which may or may not be related to being part of a religion. Other studies have correlated prayer and meditation with improved quality of life during the dying process.
This data is compelling enough to lead to some conclusions: if you already have a spiritual practice you would be wise to continue it; if you don't currently have a spiritual life but you are interested in moving in that direction, the time to start is now. As mentioned above, you can begin by exploring practices that resonate with you, such as prayer or meditation. Interestingly some studies have also shown that people with a regular spiritual practice are also likely to live longer, so there are multiple benefits to tending to your spiritual life now.
If dignity at the end-of-life is important to you, as it is for most of us, then pay attention to the factors discussed in this article. By working now to develop some coping skills for pain management, heal your close relationships, find meaning in your life, and learn to let go of your expectations, you can influence your own mental, emotional and spiritual well-being at the end-of-life. Strengthen your sense of self-worth and dignity now in order to preserve it when the time comes for you to die.
Consider joining the conversation about dignity at the end-of-life by tuning in to Choices and Dignity in Dying Symposium at End-of-Life University. This online event will be free of charge March 12-14, 2015. Your thoughts and opinions are welcome and needed. Visit this page to learn more: http://www.eoluniversity.com/special-events
About the Author: Dr. Karen Wyatt is a hospice and family physician and the author of the award-winning book What Really Matters: 7 Lessons for Living from the Stories of the Dying. She is a frequent keynote speaker and radio show guest whose profound teachings have helped many find their way through the difficult times of life. Learn more about her work at www.karenwyattmd.com.