The Role of Spirituality in Hospice Care[1]
I.
Abstract
This paper is a discussion of the meaning of
spirituality in hospice care. It presents a basic understanding of the concept
of death, hospice care, and the reaction of patients and their families to a terminal
illness such as cancer. The paper describes what amounts to an interdisciplinary
team effort that for the care of terminally ill patients and their families. It
particularly focuses on how spiritual care can provide an empathetic presence,
and how prayer and hope work together to encourage patients to positively
confront their illnesses and to reduce burdens on their loved ones.
II.
Keywords: Hospice care, mental pain, spiritual care,
accompany.
III. Introduction
During my period of theological studies, I attended
the Clinical Pastoral Education (CPE) course at the Mackey Christian Hospital
in Taipei. The aim of the course was to offer training for people who provide pastoral
care in hospice or medical organizations. The course involved a total of four
hundred hours which included discussing medical and pastoral issues, developing
religious and psychological knowledge of terminal illness, and training in counseling
skills to talk with patients and their families. Through many seminars and practical
coaching activities, I studied how to work with doctors, nurses, social
workers, and volunteers to take care of cancer patients and their families.
Entering sickrooms to visit patients and talk with
them is a great challenge because the patients who receive treatment for terminal
cancer are confronting death. Since the emotions of the patients change very
fast, and their families are affected seriously, caregivers need to talk with
them very carefully, being mindful not to say wrong words that can hurt anyone.
Indeed, CPE is an ideal program for a pastoral minister to learn how to better cooperate
with doctors, nurses and other staff members to accompany patients and their
families, to pray with and for them, and to give patients mental and spiritual
support when they face pain and death.
Thanks
to my practical and academic experience, I reached the conclusion that spirituality and a concern
for the spiritual play a very important role in hospice care. This also
motivated me to do research on hospice care. While medical care can provide
physical services, spirituality provides psychological and mental support to
the patients and their families. Certainly, spiritual care may not directly help
the patients recover their physical health. It can however provide patients and
their families with the chance to find peace in their minds and souls.
IV. Hospice and the definition of dying
Generally,
while discussing hospice care, most people directly think about death. They may
also consider hospice as a place where terminally ill patients wait for death,
there being "no treatment" for their illness. So, what is death? Death is always a tough topic that people try to avoid
talking about. And yet, no one can escape from death. "All living things
die.”[2] In
fact, people should not avoid discussing this critical issue. They should take death
seriously, and do their best to understand and to have right concepts of death
and its meaning. Furthermore, ideally, hospice care should help others
understand that death is a very important part of their lives. Hence, this
essay will try to explain death in the context of hospice care, particularly
focusing on reactions to dying on the part of patients and members of their families
as well. This can help reduce their fear of death, adjust their idea of death,
and confront dying peacefully.
It is necessary to come back to the question of “what
is death?” Death does not just happen for human beings, but for all living
things in the world. All that lives in this world eventually must die, even if living
things do not exactly know when they die. Puchalski Christina writes that “death
is integral to the human mystery.”[3] It
is obvious that no matter if a person is young, old, rich, or poor, he or she will
die. Then why people must die and “what happen to them after death are
questions that have no empirical answers.”[4] In
order to have some suitable answers to the mystery of death, people certainly need
to come back to the aspect of religion. In this way they will obviously see
that the practice of the rituals of praying for the dead, burying the dead, and
commemorating the dead may day by day express that death is not an ending, and
actually there is a connection between dying and living. Religious rituals also
reveal ideas of rebirth and/or the hope for life after death.
Although people normally connect ritual practices with
religion, they surely know that ritual practices are related to cultural values
and human relationships as well. Christian Puchalski expresses:
For many
communities, death is something seen every day and the health of the community
depends on how the village comes together to acknowledge and grieve as a whole.
One can say that deep down we know how to care for each other in these moments,
because we have been doing it for a very long time.[5]
In fact, death is a very important part of human life,
not only for an individual but also for family and community members. As a
result, fear of death, understanding of death, confrontation of death, and grief
over death are needed for a patient and for a whole community as well.
A natural question we might ask is, what does the Bible
say about death? According to the Book of
Genesis, people at the beginning of time had a good relationship with God.
Since their ancestors Adam and Eve committed original sin, however, God
punishes all of the human race. He says, “By the sweat of your face will you earn your food, until you return to the ground, as you were
taken from it. For dust you are and to dust you shall return.”[6] Certainly,
the Bible says that death is a punishment from God because of "the fall,"
which means everyone has to die. After death, there may also be a time of punishment
that no one can escape. The Letter of James
says: “As a body without a spirit is dead, so is faith without deeds.”[7] When
people die, their bodies are buried, and their souls are judged. James: “Since
human beings die only once, after which comes judgment.”[8]
Adam sinned, and caused the entire human race to be sentenced to death. But the
new Adam, Jesus Christ, can help humanity come out of the bondage of death. Whoever
believes in Jesus and lives out his teachings will be saved, and share in
eternal life in heaven with God and all the saints. On the contrary, whoever
commits sin and is unwilling to keep his commandments will be punished in hell.
However, God so loves humankind that he prepared a place called “purgatory,” for
purification from lesser sins prior to entry into “paradise.”
Indeed, death is not the end, but a beginning of
new life. Since human beings broke the law of God by eating the forbidden
fruit, they must confront death. In other words, the flesh is made of dust, so
the flesh must undergo physical death. The soul, however, is spiritual, so it belongs
to heaven or to hell depending on how people live in this life. The Lord is the
final judge, and punishes people for their sins, even as he offers a first step
to reconciliation by the sending of his only Son to rescue them from death. Indeed,
death is frightening and painful. Yet, faith in Jesus Christ says, death is not
an end, but an opportunity to begin a new life with God in heaven.
V.
The Journey of Illness: the reactions of a patient who
confronts pain
To deal with a terminal illness such as cancer, patients
must
face several challenges which become factors that are
commonly associated with their demoralization, including “early medical illness,
multiple losses, abrupt and dramatic life changes, bodily disfigurement, chronic
physical illness, multiple ineffective treatments, dysfunctional family
dynamics, unmanaged counter transference on the part of clinicians,
and social isolation.”[9]
In
different stages of treatment, terminal patients
may have different
levels of anxiety. First, they feel denial
and isolation when they receive
the news they have cancer. They do not want to accept this reality. They say, “It cannot be me." Second, they get angry easily, since they slowly feel
that their
body is weakening. As
they suffer mentally, with the realities of cancer firmly on their mind,
they may sense a
feeling of guilt, and begin to ask, “Why me?" Third, the
patient may start
to complain about the
uselessness
of treatment. Finally,
patients suffering with cancer may slowly change their
mind, and become willing to cooperate
with the doctor. Indeed,
they say, “Yes, it’s me, but… Lord, heal me.” Next, they feel frustrated and depressed because no miracle
happens, their body
becomes
weaker, and they finally
can say, on an even
deeper level, “Yes, it is me.” In fact, their final step is that they accept
the facts. With the help
of others, the patient turns to believe that death is a reality. They come to say, “I
am ready.”
Then, they calmly
accept a good dying.[10]
This
study has determined that patients have to face many kinds of anxiety. However, they are
often not
aware that anxiety affects their way of thinking, feeling, and even their physical selves.[11] Therefore, it is necessary to educate the patient to know the reasons of
anxiety. If the
hospice care team knows how to help the patients, they will
not feel they are “going
crazy” and losing control of their body and mind.[12] Moreover, they will be
willing to discuss their impressions with the medical team, and ask questions about various medical treatments available to them, or other ways to
help them overcome these anxieties.
According to the study, patients
and their families are
obviously influenced by previous experiences of
conflict and anxieties
which affect their emotions and actions. It is also difficult for medical caregivers to decide on the best ways of treatment for patients who are seriously ill. In addition, many
patients and their
families may be influenced by media that present various negative ideas on hospice care;
they particularly think that a hospice is simply a place to wait for dying.
Indeed, patients who are
terminally ill, and their families also are vulnerable
people in end-of-life care. Hospice care therefore not only provides physical assistance, but also
“promotes a largely formal and instrumental
engagement of religion and spirituality.”[13]
VI. Spiritual care affects hospice care
This
essay presents the view that “all the models of care
in medicine, nursing, psychology, and others, hospice and palliative care most
often recognize the importance of spiritual issues in the care of patients and
their families.”[14] Traditional
medical care focused on the treatment of body, but in the case of hospice
today, people recognize the importance of whole care, which means a patient needs to be taken care of as
a holistic person, which includes care for the physical, the psychosocial, and the spiritual in a person. Indeed, spiritual care can positively
affect the entire process of treatment.
How to understand
spiritual care in this case? How to define the meaning and importance of spirituality
in hospice care? Is this a matter of religion? What does spirituality mean for
a non-religious patient? Mark Cobb has written, "Spirituality
is broader than religion; in listening for spiritual or existential themes from
patients, it is important to recognize that spirituality can be expressed in
many different ways.”[15] For many people, spirituality is something related
to a church or some type of community related to religious faith. Spirituality includes
various practices of ritual, prayer, or meditation of a religion or a group of people.
Some people think that spirituality expresses itself in the form of a friend, a member of the family of the patient, or someone serving as a
care-taker, or as a companion at this very special juncture of life. These
special "spiritual persons" become an important part in their lives,
supporting and encouraging them at a time of special need. Indeed, a sense or
deep feeling for a mission of care for the sick
and dying is but a
part of a long tradition of contributions both to medical and spiritual care. But in
modem times, concerns
rooted in the spiritual may appear as “secular, rational and
scientific approaches to life and death.”[16] For
instance, a religious person, such as a member of the clergy or a monk working in
a hospice or medical center, can contribute as a member of “a
multidisciplinary care team.”[17]
To meet their responsibilities well, these persons must understand the
principle of teamwork, and be trained in skills for cooperation with others in pursuit
of total care: physical, emotional,
social and spiritual.
To
understand the meaning of spirituality better, we can probably begin by asking
what issues draw the most concern from patients who suffer a terminal illness
and are dying. Persons who are seriously ill often
provoke deep questions, such as what is the meaning of life, what is the purpose of life, and what they hope for the future. For these questions, caregivers truly need to come
to a spiritual point of view. As Christian said:
Spirituality helps give meaning to
suffering and helps people find hope in the midst of despair. In the midst of
suffering, a skillful, caring, and compassionate health care professional can
be an important anchor in which the patient can find solace and the strength to
move through distress to peace and acceptance. [18]
Certainly, spirituality
is central to persons in the process of dying
who need an expert to consistently accompany them and help them find the
meaning of life, suffering, and hope. When patients
confront a
mortal problem,
they sometimes struggle
with spiritual suffering such “as inner distress,
grief, loss,
hopelessness, worry, and isolation.”[19]
In such moments, they need persons nearby with a sensitivity to the spiritual in
life, someone willing to sit with them, to listen to them, give them support,
and lead them to a peaceful experience of what they themselves understand as the
meaning of life. This may lead to a feeling of deep gratitude for
the gift of life itself. Being grateful for life and having a “sense of gratitude for life could work in opposition to spiritual
pain and lead to a richer, deeper life.”[20]
In fact,
spirituality has been seen as a way to help patients rebuild relationships
which refer to the relationship of a patient with self, with others, with
nature, and with God. Firstly, the relationship with self means they need to
come back with their own to grasp the dignity of life and value of life. Spirituality helps them “be able to reach self-acceptance, self-reconciliation and peace.”[21]
Secondly, relationship with others is very important and meaningful for patients because they
need to receive love and share love through the support and companion of their family
and friends. Thirdly, a relationship with
nature is also
necessary for patients. As one researcher puts it, “being in touch with the beauty of nature could
bring comfort and inspiration, reduce anxiety and lead to a sense of wonder at
the greater meaning of life. Music could uplift and inspire creativity and
inner peace.”[22]
Finally, relationship with God is an especially
important relationship that patients want to maintain in the hope of “protecting patients from the fear of
death and loneliness, and giving strength, comfort and peace.”[23]
As a result, by accompanying, praying, meditating, spiritual care can help
patients know how to communicate with God or remain in a peaceful feeling to comfort
their pain and illness.
In addition, spiritual care can provide patients with hope: hope of
being healed, hope of peace, and hope of a better life after death. Research suggests that “spiritual beliefs contributed to hope; even
affirmed atheists spoke of their beliefs in the afterlife, in the anticipation
of a spiritual existence after death and being able to meet loved ones again.”[24] These works of research have proven that spiritual care plays a very important role in hospice care.
Undoubtedly, spiritual care contributes much. It is an enrichment that helps patients to reach a sense of connection with life,
others, nature, and God in a peaceful relationship.
VII. Conclusion
Speaking personally, the greatest lesson I have learned
in this study is a deepened understanding of the value of interdisciplinary
work in hospice care. This type of cooperative effort is a new way that can serve
patients with terminal illness when they confront anxieties related to the
process of dying. In different periods of time, patients have to face different
states that include physical and mental pain, and possibly intense experiences
of anxiety, depression, hopelessness, disintegration of human relationships, or
anger at God.
Traditional medical care can offer patients
physical treatment. Only well planned hospice care, however, can provide the whole
sense of well-being in which spiritual care plays a critical role. While
confronting illness and suffering pain, patients are often “broken" in their
relationships with themselves, with others, or with God. Spirituality enables patients
to rebuild relationships their illness has negatively affected. Moreover, with the service of spiritual care,
many “individuals expressed a hope for
improved family relationships, others expressed the desire for 'healing relationship' with others, with nature and with God.” With the
presence of spiritual care, many patients change their attitude about life and
death. They begin to think more positively, understand the dignity of life, respect others, and contribute to the
people around them as well as they can. In this case, spirituality
may not be a religion, but rather a constant presence to listen, to
emphasize, and to share the burden of patients and their families. Obviously,
this way can help patients gain a new hope for the afterlife, a better place,
such a paradise, heaven, or an eternal life with Lord Jesus, Buddha, Allah, or
other divinities in
whom they may believe.
VIII. References
Strada, E.
Alessandra. The Helping Professional’s Guide to End-of-Life Care:
Practical Tools for Emotional, Social, & Spiritual Support for the Dying.
New Harbinger Publications, 2013.
Cobb, Mark, and
Robshaw, Vanessa. The Spiritual Challenge of Health Care. Churchill Livingstone, 1998.
Singer,
Peter. Rethinking Life and Death: the Collapse of Our Traditional
Ethics. St. Martin’s Griffin, 1996.
Puchalski,
Christina M., and Ferrell Betty. Making Health Care Whole: Integrating
Spirituality into Health Care. Templeton Press, 2010.
Mei-hui, Pan. Confront
Death. Brysterian Press, 1998.
Bryant, Clifton
D. Handbook of Death and Dying. Sage Publications, 2003.
Bramadat, Paul Coward, et al. Spirituality in Hospice Palliative Care. State
University of New York Press, 2013.
Gates, George N.
“Where Is the Pastoral Counselor in the Hospice Movement?” Journal of
Pastoral Care, vol. 41, no. 1, 1987, pp.32–38.
Greeves, Trish T.
“Liturgy for Last Days: Pastoral Reflections on Acknowledging and Supporting
the End-of-Life Experience.” Journal of Pastoral Care & Counseling, vol.
70, no. 3, 2016, pp. 186–189.
Edwards, A et al.
“Review: The Understanding of Spirituality and the Potential Role of Spiritual
Care in End-of-Life and Palliative Care: a Meta-Study of Qualitative
Research.” Palliative Medicine, vol. 24, no. 8, 2010, pp.
753–770.
Reblin, Maija et
al. “Strategies to Support Spirituality in Health Care Communication: A Home
Hospice Cancer Caregiver Case Study.” Journal of Holistic Nursing, vol.
32, no. 4, 2014, pp. 269–277.
Recharch, E. et
al. “What is Spirituality? Evidence from New Zealand Hospice Study.” Mortality, vol. 16, no. 4, 2011, pp.307-324.
Collins, Andrew et
al. “Hope Tree: An Interactive Art Installation to Facilitate the Expression of
Hope in a Hospice Setting.” American Journal of Hospice and Palliative
Medicine, vol. 35, no. 10, 2018, pp. 1273–1279.
James T. Bretzke.
“A Burden of Means: Interpreting Recent Catholic Magisterial Teaching on End-of
–Life Issues.” Journal of the Society of
Christian Ethics, vol. 26, no. 2, 2006, pp. 183-200.
Charles J. Lopez
Jr. “Hospice Chaplains: Presence and Listening at the End of Life.” Current in Theology and Mission, vol.
45, no. 1, 2018, pp. 45-51.
Julie J. Exline et al. “The Spiritual Struggle of Anger toward God: A
Study with Family Members of Hospice Patients.” Journal of Palliative Medicine, vol. 16, no. 4, 2013, pp. 369-376.
[1] This essay was
written under the instruction of Mrs. Nancy Michael in a “High Intermediate ESL
Writing and Grammar” class of the Spring semester, 2019. I received help from a
professor friend in improving the English language use in this study. The
revisions I received did not affect the content or organization, which is
totally my own. English is not my mother tongue, and I am grateful to all who
help me to improve.
[2]Singer, Peter. Rethinking Life and Death : The Collapse
of Our Traditional Ethics. St. Martin’s Griffin, 1996, p.
21.
[3]Puchalski,
Christina M., and Ferrell Betty. Making Health Care Whole: Integrating
Spirituality into Health Care. Templeton Press, 2010, p. 26.
[4]Ibid.,
p. 26.
[6]Gen. 3:16-18.
[7]James 2:26.
[9]Strada, E. Alessandra. The Helping Professional’s
Guide to End-of-Life Care : Practical Tools for Emotional, Social, &
Spiritual Support for the Dying. New Harbinger Publications, 2013, p. 82.
[12] Ibid., p. 126.
[13]
Bramadat, Paul Coward, et al. Spirituality in Hospice Palliative Care.
State
University of New York Press, 2013, p. 87.
[15]Cobb,
Mark, and Robshaw, Vanessa. The Spiritual Challenge of Health Care.
Churchill Livingstone, 1998, p.166.
[16]Ibid., p. 167.
[17]Ibid., p. 167.
[18]Puchalski, pp. 3-4.
[19]Ibid., pp. 5-6.
[20]Gates,
George N. “Where Is the Pastoral Counselor in the Hospice Movement?” Journal
of Pastoral Care, vol.41, no.1, 1987, p.37.
[21]Edwards,
A et al. “Review: The Understanding of Spirituality and the Potential Role of
Spiritual Care in End-of-Life and Palliative Care: A Meta-Study of Qualitative
Research.” Palliative Medicine, vol. 24, no. 8, 2010, p. 759.
[22]Ibid., p. 759.
[24]Ibid., p. 458.
