paid bereavement—and then only for very immediate family members.

Very often the person has not

been buried, or a service conducted, in those three days, and the shock of the death can delay active
grieving for some time. Three days is not enough time to face the world after a painful loss and then be
expected to act as though everything is just fine. Just being familiar with death and grief does not
guarantee understanding, or ease, in dealing with the process. Healthcare professionals can have just as
much difficulty as their patients—maybe more—given the frequency with which they come face to face
with dying, death, and grief. It can be difficult to care for someone who is grieving when the caregiver is
in the midst of his/her own grief journey. A caregiver’s grief can be triggered just by being in the
presence of a patient who is also grieving. It is sometimes challenging for a busy caregiver to distinguish
between the patient’s grief and his/her own. For the well-being of all concerned, it is essential for
healthcare professionals to be aware of and deal with their own grief and loss. Nurses and others are
better able to serve when they have acknowledged their own pain and have made the effort to work
through their own grief process.

Nurses providing spiritual care

Deep listening, presence, bearing witness, and compassion are all simple ideas. Although simple, these
interventions are not easy. To provide these interventions in a way that invites healing requires, from the
caregiver, a willingness to learn, the ability to be without agenda, and the commitment to be ever
vigilant and self-introspective. Nurses, who are called on to provide these interventions, are at the
forefront of patient care. They are asked, every day, to deal with the medical, emotional, social, and
spiritual crises and burdens of others’ lives. They are expected to ease suffering whenever, and wherever,
possible. At best, nursing is difficult work. We seem to be asking almost superhuman acts from nurses,
who want deeply to provide all that is asked of them. Fortunately, quality spiritual care does not require
superhuman acts. It does require human kindness, compassion, and caring.

References

1. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative
care: the report of the consensus conference. J Palliat Med. 2009;12(10):885–904.

2. Pulchalski C, Ferrell B. Making Health Care Whole. West Conshohocken: Templeton Press; 2010.

3. McSherry W, Ross L. Nursing. In: Cobb M, Puchalski CM,

Rumbold B (eds.), Oxford Textbook of Spirituality in Healthcare. New York: Oxford University Press;
2012:211–217.

4. Bryson KA. Spirituality, meaning, and transcendence. J Palliat Support Care. 2004;2:321–328.
5. Post SG. Unlimited Love: Altruism, Compassion and Service. Philadelphia, PA: Templeton Foundation
Press; 2003.

6. www.macmillandictionary.com/dictionary/american/existential. Accessed June 20, 2013.

7. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative
care: the report of the consensus conference. J Palliat Med. 2009;12(10):885–904.

8. Bryson KA. Spirituality, meaning, and transcendence. J Palliat Support Care. 2004;2:321–328.

9. Remen RN. In the service of life. Noetic Sciences Review. 1996;37:24–25.

10. Remen RN. In the service of life. Noetic Sciences Review. 1996;37: 24–25.

11. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of
palliative care: the report of the consensus conference. J Palliat Med. 2009;12(10):885–904.

12. Puchalski C, Ferrell B, Virani R, et al. Improving the quality of spiritual care as a dimension of
palliative care: the report of the consensus conference. J Palliat Med. 2009;12(10):885–904.

13. Halifax J. Project on Being with Dying Training for Health Care Professionals. Santa Fe, New Mexico,
2001.

14. Halifax J. Project on Being with Dying Training for Health Care Professionals. Santa Fe, New Mexico,
2001.

15. Sulmasy DP. Ethical principles for spiritual care. In: Cobb M, Puchalski CM, Rumbold B (eds.), Oxford
Textbook of Spirituality in

Healthcare. New York: Oxford University Press; 2012:465–470.

16. Kearsley JH. Wal’s story: reflections on presence. J Clin Oncol.

2012;30(18):2283–2285.

17. Neff KD. Self-compassion: an alternative conceptualization of a healthy attitude toward oneself. Self
Identity. 2003;2:85–102.

18. McDonough-Means S, Kreitzer MJ, Bell I. Fostering a healing presence and investigating its mediators.
J Altern Complement Med. 2004;10(S1):S-25–S-41.

19. Guenther, MB. Healing: the power of presence a reflection. J Pain Symptom 2011;41(3):65–654.

20. Chochinov HM, Cann BJ. Interventions to enhance the spiritual aspects of dying. J Palliat Med.
2005;8(S-1):S-103–S-115.
21. Slater V. What does “spiritual care” now mean to palliative care? Eur J Palliat Care. 2007;14(1):32–34.

22. Mako C, Galek K, Poppito SR. Spiritual pain among patients with advanced cancer in palliative care. J
Palliat Med. 2006;9(5)1106–1113.

23. Guenther, MB. Healing: the power of presence a reflection. J Pain Symptom Manage. 2011;
41(3):650–654.

24. Halifax J. Personal communication. December 12, 2008.

25. Millspaugh D. Assessment and response to spiritual pain: Part II. J Palliat Med. 2005;8(6):1110–1117.

26. Ferrell BR, Baird P. Deriving meaning and faith in caregiving. Semin Oncol Nurs. 2012;28(4):256–261.

27. Pronk K. Role of the doctor in relieving spiritual distress at the end of life. Am J Hosp Palliat Med.
2005;22(6):419–425.

28. Arrien A. The Four-fold Way. San Francisco, CA: Harper San Francisco; 1993.

29. Klaus D, Silverman PR, Nickman SL. Continuing Bonds: New Understandings of Grief. Philadelphia,
PA: Taylor and Francis; 1996.

30. Klaus D, Silverman PR, Nickman SL. Continuing Bonds: New Understandings of Grief. Philadelphia,
PA: Taylor and Francis; 1996.

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32. Feldstein CBD. Bridging with the sacred; reflection of an MD chaplain. J Pain Symptom Manage.
2011;42(1):155.

UCHAPTER 34

Meaning in illness

Tami Borneman and Katherine Brown-Saltzman

Life is defined as “BC” or “AC”—before cancer or after cancer.

Cancer patient

Uncertainty—the next step of the journey with chemo-maintenance therapy. Not knowing how
treatments are going to be and how it will affect me. There’s this tunnel but there’s no light yet. Did
I repent my sins enough to beat the cancer? Why did you do this to me? What did I do to deserve this?
Sometimes I feel like it’s a punishment. God is mysterious. I get tears in my eyes when I see the kids with
cancer and think, God why would you do this to kids? How long will the drugs last and work? How much
time do I have? And quality of life? As long as I do the patient log and keep the positive going, I’m pretty
good.

Cancer patient

In the driest whitest stretch

Of pain’s infinite desert

I lost my sanity

And found this rose

Galal al-Din Rumi; Persia, 1207–1273

Key points

◆ Finding meaning in illness is an important issue when facing the end of life.

◆ The process of finding meaning in illness involves a journey through sometimes very difficult
transitions.

◆ A terminal illness can greatly impact the patient-caregiver relationship.

◆ It is essential for nurses to experience their own journey regarding the dying process an bring with
them a willingness to be transformed by it.

Is it possible to adequately articulate and give definition to meaning in illness? Or is meaning in illness
better described and understood through using symbolism and metaphors such as the above poem? To
try to define that which is enigmatic and bordering on the ineffable seems almost sacrilegious. The
unique individual journey of finding meaning in illness experienced by each patient facing the end of life
and their family caregiver would seem to be diminished by the very process that seeks to understand
through the use of language.Is it that we seek to find meaning in illness or is it that we seek to find
meaning in the life that is now left and in those relationships and things we value? Do we seek to find
meaning in illness itself as an isolated event or that which is beyond the illness, such as how
to live out this newly imposed way of life? Terminal illness often forces us to reappraise the meaning and
purpose of our life. If we allow space in our lives for the process of meaning in illness to unfold, we then
move from the superficial to the profound.Terminal illness also forces us at some point to look directly at
death, yet we resist getting in touch with the feelings that arise. Everything in us seeks life. Everything in
us hopes for life. Everything in us denies death. There is something very cold, very unmoving, and very
disturbing about it all. Does the end of one’s human existence on Earth need to be the sole metaphor for
death?Although end-of-life issues have progressed nearer to the forefront of healthcare, the dying
patient is still the recipient of an impersonal, detached, and cure-focused system, thereby exacerbating
an already catastrophic situation. As necessary as it is for nurses to use the nursing process, it is not
enough. The patient’s illness odyssey beckons us to go beyond assessment, diagnosis, intervention, and
evaluation to a place of vulnerability, not in an unprofessional manner but, rather, in a way that allows
for a shared connectedness unique to each patient-nurse relationship. We need to be willing to use
feelings appropriately as part of the therapeutic process. Separating ourselves from touching and feeling
to protect ourselves only serves to make us more vulnerable, because we have then placed our emotions
in isolation. Nurses can be a catalyst for helping the patient and family find meaning in the illness and, in
the process, can help themselves define or redefine their own meaning in life, illness, and death.

Meaning defined

Johnston-Taylor1 presents several definitions for meaning (Table 34.1). In the dictionary,2 one finds
meaning defined simply as “something that is conveyed or signified” or as “an interpreted goal, intent, or
end.” But it is the etymology of the word “mean”