Kenneth Doka is the senior consultant for the Hospice Foundation of America. Every year, the HFA organizes a conference on a topic that relates to end of life care. This year’s conference will focus on Spirituality and End-of-Life Care. Excerpted in the Huntington Post is his introduction to this year’s conference.
Do individuals become more religious as they die? This question has often been debated among academics who study death. Such debate avoids the central issue that the dying process raises profound spiritual concerns of meaning and connection for individuals. Whether those who are dying reconnect, review, or renew prior religious beliefs — or are even open to new religious experiences — they are likely to engage in some form of spiritual searching.
That search may be deeply religious or not, but it is always spiritual, and it can occur whether the person was traditionally religious or followed another belief system, whether the person was a humanist, atheist, or agnostic. Despite this reality, spiritual needs of the dying are often overlooked or ignored by family caregivers, clinicians and even clergy, who may be uncomfortable with spiritual searching by the dying and with conversations that may occur that have strong spiritual significance.
There are certain basic human needs that exist as long as we live — comfort, connection, and care, but there are also three distinct spiritual needs that arise as individuals become aware of their finitude, or the sense that their life is now severely limited.
The first of those spiritual needs is affirmation that the dying individual’s life has had meaning. We all would like to think that our life counted, that it mattered, and that at least in some small way, the world is different and maybe even better, because we were part of it. This often prompts an individual to perform his or her own life review process to affirm that life had meaning and value. For Erik Erikson, a developmental psychologist, a successful life review means that we can view life with “ego integrity,” or a satisfaction that we have lived a worthwhile life. The ultimate goal of life review is that one’s life should be a “good story.” If the life review is not successful, a dying person may perceive that his or her life has been wasted, leaving the individual with a sense of despair as death approaches.
To encourage the reminiscence that is an inevitable part of that life review process, friends and families can offer terminally ill person a gift of sharing old photographs, trading stories, or, if the person’s condition allows, facilitating pilgrimages important to the person’s shared past. For example, a family whose grandfather served in Korea might take him to the Korean War Memorial. A person who enjoyed the ocean can be driven to the beach to watch and listen to waves crash and smell the surf. Someone who enjoyed a particular tradition of a family feast, such as Thanksgiving, can be treated to flavors and smells that exist with that meal. Yet perhaps the greatest gift that can be shared in the life review process requires only honesty and communication and is achieved by letting the dying person know the ways that he or she influenced or affected our life.
In addition to the need for a life review to be a “good story,” the awareness of finitude often engenders concern with a second spiritual need: dying an appropriate death. This need is the desire to die in a way consistent with the individual’s values, wishes, or earlier life. On a practical level, this might mean that a dying individual is intent on instructing their adult children about their estate, advance directives, even their wishes about funerals and other rituals. These conversations can be difficult for families and others at the bedside, as it easy to fall into the “mutual pretense” that can accompany dying — that is, a shared pretense that it is not happening. Yet such a stance can often stifle the legitimate concerns of a dying relative that his or her dying wishes are understood and respected.
It is important to listen to the dying person’s needs and not impose one’s own fears, beliefs, or biases. There is no one way that we should die, because there is no correct way to die. The dying need not “accept” death, nor utter whatever “magic” words others think we might wish to say. Edwin Shneidman, a leading thanatologist (one who studies death), put it wisely — “no one has to die in a state of psycho-analytic grace.” Each individual will find his or her own way to die — consistent with the way he or she lived. To some it may be a peaceful, even graceful, acceptance of the inevitable. To others it may be to bitterly fight to the end — burning and raging, not going gently into that night. Still others will select Woody Allen’s dictum; “I don’t mind dying — I just don’t want to be there when it happens.” We need not impose our beliefs of a good death on those around us.
The third spiritual need of the dying is to find hope beyond the grave. A person may find this in complementary ways by finding comfort in faith, religion, and spirituality. An individual may take comfort in heaven, an afterlife, reincarnation, or some form of transcendence. There may be other ways that the dying reach for a form of symbolic immortality as well, including finding solace in the notion that they will return to the cycle of life or that they will live on in our progeny, work, and accomplishments.
The important thing is to remember the lesson that Dame Cicely Saunders, the founder of the modern hospice movement taught us. Dying is more than a physical event. Rather the experience reaches us on all levels — psychological, social, and of course, spiritual. We cannot neglect the spiritual needs any more than we can neglect the physical needs. Care for the dying is inherently holistic.
When dealing with people facing their own mortality, and by extension one’s family, it is best to provide people space and opportunity to share about life as they experienced. With that said, for many of those receiving hospice care, they are no longer able to share about what life meant to them and what meaning they have in life. This is a time when families can also begin the grieving process by reminiscing on how their loved ones affect their lives. I quote the whole piece because it really speaks to the core of the need for spiritual support in end-of-life care. Having people trained to help unlock meaning and provide people a space to share that spirituality is the core of chaplaincy. To merely visit, spend a few minutes and pray, while certainly having value, is not the where chaplaincy really makes its mark.
Chaplaincy work is the ability to recognize and help people explore their beliefs and their lives in reflection. It is a role that is designed to close the gaps between the dying and their loved ones when there is a difficulty in communicating each others fears and tears.
Death is difficult, regardless of one’s spiritual, religious and cultural mindset. To prevent people from exploring what that difficulty is is a detriment to growth even during these final stages of life. I often speak to my residents in the Assisted Living facility I work in about how one can continue to strive forward in life, regardless of age. There is always a place to grow in spirit. Being more “religious” for most people feels burdensome and is more difficult due to ingrained habits. To change one’s response to others and how one lives and appreciates life is always something that can be accomplished.