It’s Not Going Well
Maybe you feel you or a loved one has hit rock bottom. Maybe you’re still in treatment, maybe you’ve stopped. You may be terminal. You’re no longer hoping for a cure; instead, you’re preparing for the next step. Approaching the end of life almost always raises spiritual and other kinds of questions. Here are some words you might find helpful.
There is nothing more difficult than the emotional and spiritual journey of a person who is dying and/or that of those who love and accompany them. The range of emotions can be overwhelming, confusing, or evening frightening at times. It is extremely important for you to know that whatever your emotions are, they are normal. Also, understand that there is no “right” or “wrong” way to feel.
You may have heard talk about “stages” in grief, such as denial, anger, depression, etc. The reality is that there are no neat and orderly stages that can be predicted or expected. Some people do feel anger, which is entirely appropriate. It’s okay to be angry at the illness that will take your or your loved one’s life; it’s even okay to be angry with God. The same is true for the other emotions you may be feeling: sadness, loneliness, fear, and anxiety. You may feel some, all, or none of them. They may last for a few moments or feel as though they will never end.
The challenge is how you will manage and express those emotions in ways that are not harmful to you or to others. Talking with the person who is dying or your loved ones, writing down your feelings, taking on a hobby or project if you feel physically up to it, practicing mediation or praying if you are a religious or spiritual person, sitting where you can enjoy nature – all these are only some of the ways you can manage the feelings are experiencing.
Most importantly, know that your feelings are yours. Those who care for you may want to encourage you to “be strong” or “not be sad” or “not cry.” You may not find those words to be helpful. Try to look beyond the words that are said and remember that those who care for you are only trying to express their care and concern. It may be difficult, but if you can, tell those around you what words bring you a sense of comfort and which ones you’d rather they not say. Let them know when it is helpful for you to have company and when you’d rather have time alone.
If you do find your feelings to be overwhelming and are unable to find ways to cope, be sure to seek out help. Doing so isn’t a sign of weakness, but rather one of strength. Talk to your doctor, religious or spiritual leader, or a close family member or friend who can help you find the resources you need.
Many people approaching death engage in a self-reflective process in which they survey and review their lives. This process, often called “life review,” can help you work through unresolved conflicts. It’s autobiographical in nature - you think, talk or write about the narrative of your life. You celebrate your accomplishments and acknowledge and grieve things that didn’t work out as you had hoped. As you observe and reflect on past events, you revise and deepen your understanding of these experiences. Life review can create a sense of closure and peace.
About 10 years ago, Harvey Max Chochinov, a professor of psychiatry and director of the Manitoba Palliative Care Research Unit of CancerCare in Canada, developed a protocol called Dignity Therapy. Dignity Therapy was designed to address the psychological, existential, and spiritual challenges that patients and their families face as they grapple with the reality of life drawing to a close.
Using the Dignity Therapy protocol, a trained therapist facilitates the expression of thoughts, feelings, and memories that are compiled in a narrative document for the patient to share with a friend or loved one. The ultimate goal of Dignity Therapy is to help bolster the dignity of dying patients, and address their suffering. This therapeutic intervention invites individuals with life-limiting illnesses to reflect on matters of importance to them. Tested with patients around the world with advanced illnesses, dignity therapy has proved to benefit not only patients, but their families as well.
In his book, Dignity Therapy: Final Words for Final Days (2012), Dr. Chochinov addresses one of the most important dimensions of being human. Being alive means being mortal; he argues that dignity therapy offers a way to preserve meaning and hope for patients approaching death. The book offers guidance for people interested in implementing the program, and shows how dignity therapy can change the end-of-life experience for those about to die and for those who will grieve their passing.
The National POLST (POLST Physician Orders for Life-Sustaining Treatment) program offers advance care planning to patients with cancer and other serious illnesses. It’s based on a conversation between you and your healthcare professional about your treatment options (including benefits and alternatives) and what will happen as your cancer progresses. Equally important, you will talk about your goals of care and your core values. Your healthcare professional will fill out and sign a POLST form, outlining what treatments you do (and don’t want) at the end of your life. Since the POLST is a medical order, your treatment wishes will be known and followed during any medical emergencies. Laws vary by state, so check with your healthcare provider.
Advance care planning is different for everyone. You need to think about your individual values and what is important for you at the end of your life. At the same time, the process of completing the form can spark conversations with your caregivers and family members that make end-of-life decisions easier for them. Family members or a designated surrogate may be able to speak on behalf of a loved one. A healthcare professional can complete the POLST form based on the surrogate’s understanding of the patient’s wishes. For more information, go to POLST.org
Most religious traditions offer a paradigm of life after death as a reward for earthly pain and suffering. For Christians, that’s called Heaven; for Jews, it’s known as The-World-to-Come; some Eastern religions believe that souls transmigrate into other bodies and live again. For believers, religious traditions can give hope, they help us understand and bring meaning to otherwise unacceptably painful events in our lives. You might want to familiarize yourself with the teachings of your faith tradition on the afterlife. Consult a chaplain or clergy for more information. An extensive bibliography exists about theological views of the afterlife. Christians might consider What is the Truth about Heaven and Hell? Sorting out the Confusion about the Afterlife, by Douglas Jacoby. Jewish ideas are outlined in What Happens after I Die? Jewish Views of Life after Death, by Rifat Sonsino and Daniel Syme.
What if you’re not a religious person? How do you understand what happens after death? Maybe you can find the start of an answer to this question by thinking about transcendence, about being part of something bigger than ourselves. Consider all the people whose lives you have touched – you will always be part of their lives. You have transmitted your wisdom, your tradition, your tears and your joy and your laughter to others. Your life has become intertwined with their lives, and each of them will carry a part of you forever. In The Last Passage: Recovering a Death of Our Own (1999), Donald Heinz argues that in other times and other cultures, preparing for death was seen as an important spiritual task – perhaps most important task of our lives. He argues that we can reconceive death and reinvest it with meaning. In his book, he shows how we might create rituals using music, visual arts, language and more to enable us to approach death with reverence, as the spiritual consummation of our lives. Other helpful resources include Leo Tolstoy’s 1886 story, “The Death of Ivan Ilych” and C.S. Lewis’s classic on the spiritual journey of grief, written after his wife’s death, A Grief Observed (1961).
Caregivers who accompany the dying share their emotional and spiritual roller coaster. Like the patient, caregivers experience the feelings described by Elisabeth Kubler-Ross in her classic text, On Death and Dying: denial, anger, bargaining, depression and acceptance. Like the patient, you might experience several of these feelings simultaneously, or in a different order. Caregiver worries are compounded by ongoing responsibilities for work and household matters maybe children or pets. With the worries and concerns often comes increased loneliness and resentment. How can you be expected to handle everything? Who can help you? How will you be able to cope with your loved one’s death?
When things aren’t going well, it’s more important than ever to care for yourself and your own needs. No one can function effectively in the constant presence of serious illness. Try to give yourself a break from the hospital room. Accept offers of help from family, friends and neighbors. Find things that you can enjoy – and don’t feel guilty about it. Eat well and try to sleep. The better you feel, the better you’ll be able to fulfill your caregiver role.
Communication is key. Often, family members hide their feelings to spare the dying person’s feelings; the dying person does the same. Most people are fearful about discussing death. It takes a great deal of courage. But communicating honestly with the dying person can prepare everyone better for life after the death. Offering this opportunity can be a great gift to your loved one. Victor Frankl’s classic, Man’s Search for Meaning (1959), speaks of a man who was portrayed waiting for death in a courageous and dignified way – Frankl comments that it is a great accomplishment to meet death well. Try to let this happen if you can.
For yourself, consult a professional or talk to a chaplain or clergy for support as you work through your grief and any anger, resentment or guilt you may feel. The more you are able to express this grief before the death, the less difficult it will be afterwards. When family members share these emotions, they can gain support and gradually accept the impending death. And that helps the patient, too. When you are ready to “let go,” the patient is able to die more peacefully.
Every loss is unique. How you experience the loss depends on the intensity and the complexity of your attachment. Believers might take comfort from the words or rituals of their faith traditions. Others might create their own ways to mourn, and make meaning of their loss in individual ways. Most important, remember that grieving is a journey. Expect the grief process to last at least one to three years.
Frankel, a contemporary of Freud, wrote, “What is demanded of man is not, as some existential philosophers teach, to endure the meaninglessness of life, but rather to bear his incapacity to grasp its unconditional meaningfulness in rational terms” (Man’s Search for Meaning, 118). He created an intervention known as logotherapy, which holds that we discover meaning in our lives in three ways: by creating a work or doing a deed; experiencing something or encountering someone; and by the attitude we take toward unavoidable suffering. (Ibid. 111).
May you be comforted in your grief, and find the strength and courage to live your life after your loss.