Introduction

There is little doubt that attending to the spiritual well being of patients has been part of the role of healthcare’s earliest manifestations. Historically, in Western Europe and America, the healthcare profession was rooted in caring for the body and the soul. But this changed in the latter part of this century, as medicine and nursing identified to a greater degree with the biomedical model of healthcare. There are many who argue that healthcare has become one-dimensional and has fallen short of the holistic approach upon which it was founded. The failure of high-tech medicine to solve many problems and the needs of patients with chronic illness has led leaders in healthcare to develop new models of practice and new codes of conduct, which specifically mention the spiritual dimension as part of good holistic care. Nowhere has the call for change become more of a reality than in the modern hospice movement (as developed by Cicely Saunders and adopted by the federal government) where addressing spiritual needs of the dying is mandated and expected.

Defining the Spiritual

The term spiritual, although deployed liberally, is notoriously difficult to define. I think one of the best descriptions is this: a quest for meaning and purpose in life and a striving for answers about the infinite.” I think this definition captures well the important fact that spirituality encompasses more than the religious. It is the part of the human being that tries to understand the mysteries of the universe and make some meaning of life and the individual events that have occurred in a lifetime. It seems ingrained in human nature to connect to something bigger than ourselves. This concept seems to be well understood by the general population. In a Newsweek magazine article, “84% of Americans said spirituality is somewhat or very important in their daily life…Only 4 – 6% of Americans are atheists or agnostics…” Newsweek concluded one section of the article by stating, “In America, even atheists are spiritualists.”

The Spiritual Within the Hospice Framework

Cicely Saunders, the founder of the modern hospice movement, declared that the goal of hospice is to relieve suffering. She then went on to define suffering as total pain: the pain of the physical, social, emotional and the spiritual. Physical suffering might include shortness of breath or constipation or nausea or simply pain. Social suffering might include the pain of broken relationships or a difficult living situation or loss of an important role. Emotional suffering is most frequently seen in the pain of depression and anxiety. Spiritual suffering can be seen when someone is burdened by their failures or has unresolved grief or a terror of the afterlife or simply lacks a connection with a higher power when that connection is desired. It is within and because of this framework of issues that Cicely Saunders insisted hospice work must be done by a team. And each team must have representatives from medicine, nursing, social work and spiritual care if they are truly to reduce the total pain and suffering of a patient.

The Spiritual Needs

Researchers at Calvary Hospital reported that 61% of their patients had “spiritual pain” at the time of admission and 96% reported having had “spiritual pain” at some time in their life. Christina Puchalski at George Washington University School of Medicine demonstrated this need by listing a series of questions that patients had asked physicians — all of them, in her view, reflecting a deep spiritual need:

“Why is this thing happening to me?”

“How will I survive this loss?”

“What will happen to me when life ends?”

“What gives my life meaning and purpose?”

“If there is a God, will he be there for me?”

“How can I live now, knowing that I will die?”

“How will I be remembered?”

Ira Byock, in his book, Dying Well, lists five things that people should try to say to others in order to help bring closure to their loved ones. These are: “Please forgive me”, “I forgive you”, “Thank you”, “I love you”, and “Good-bye”. These five little statements have had a powerful effect on my dying patients and families. I believe the genius rests in Byock’s ability to turn the deep and profound spiritual needs of human beings into tasks. The need to be forgiven and the need to forgive, the need to be loved and to love, the need to cultivate thankfulness and need to thank others, and, finally, the need to say “good-bye”. All of these statements, I believe, express a deep spiritual need that all human beings would accept — regardless of religion and spiritual beliefs.

Wayman in his article, “Self-transcending through Suffering” in the Journal of Hospice & Palliative Medicine, listed seven spiritual goals that all human beings seek to achieve — he calls this self-transcendence: reconciliation, awe, forgiveness, love, hope, gratitude, humility, and surrender/worship.

Finally, in two articles in the Journal of the American Medical Association (296:2254 and 287:749-754), the authors clarified spiritual needs by defining them in four categories: hope, meaning, values and relationships. And then they listed questions that clinicians could use to assess the spiritual needs of their patients at the bedside:

Questions About Hope

  • As you look to the future, what are your biggest hopes? What are your fears?
  • Are these things you might hope for even if you cannot be cured?
  • Does the word “hope” have any spiritual significance for you?
  • Would anything be unfinished it you were to die sooner rather than later?

Questions About Meaning

  • What gives your life the most meaning?
  • What gives you strength in these difficult times?
  • Do you have any thoughts about why this is happening to you?
  • If your time were limited, what would be most important to you?

Questions About Values

  • Are you able to hold on to your sense of dignity and purpose?
  • What things would be left undone if you were to die sooner rather than later?
  • How are your family and friends treating you since you became ill?
  • Are there any spiritual or religious resources you can draw on at this difficult time?

Questions About Relationships

  • How is your family coping with your illness?
  • Is it difficult for you to be taken care of by others after being a caregiver for so long?
  • Is there anyone with whom you would like to make amends?
  • If the patient is known to be religious, “How are things between you and God?”

Dr. Daniel Sulmasy stated that questions of hope, meaning, value and relationships are the deep-seated spiritual needs of dying persons. Sulmasy concludes by saying that these needs have been “affirmed by thousands of years of wisdom accumulated by the world’s great religions and reconfirmed by recent qualitative research even among non-religious Westerners”.

Why not leave the spiritual to the spiritual professionals?

Given that there are these spiritual needs, you may ask, why can’t physicians, nurses, therapists, social workers and other healthcare workers simply forget all of this and leave this “spiritual stuff” to chaplains and religious leaders? I think the answer to this is multifaceted. From a purely practical standpoint, chaplains are not ubiquitous. But in a much deeper way, to ignore the spiritual is to live out the false dichotomy between medicine and spirituality that Cicely Saunders was trying to rectify. Eliminating the spiritual dehumanizes a patient and, to a certain extent, the whole field of medicine. If we ignore the spiritual, we would be supporting a materialistic and reductionistic philosophy. In other words, spirituality would be treated like an organ system — to be cared for by one more specialist. And keep in mind that if we leave it all to religious leaders and chaplains, the very real spiritual needs of the irreligious would more likely be ignored.

Conclusion

Spiritual pain is a challenging symptom, which can affect all of the human dimensions of suffering: physical, emotional, and social. Hospice, with its philosophy of addressing all of these dimensions with an interdisciplinary team is uniquely poised to help patients and caregivers cope and handle this pain. Referring a patient to AseraCare Hospice is the best way to ensure that your patient will receive the best end-of-life care possible. In the next CareMatters, we will be discussing practical strategies for comforting patients who are suffering spiritually.