Spiritual Distress

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Mr. M. is 52 years old and in the infirmary for treatment of dehydration resulting from diarrhea that occurred after receiving chemotherapy for colon cancer.  The physician recently discussed with Mr. M. permanent assignment to the infirmary for end-of-life care. Mr. M. is listless and unengaged while in the infirmary. He expresses loneliness and frustration that he has no visitors especially now that he has cancer. He is estranged from family because he was physically abusive to his wife and daughter. Mr. M. was convicted of child sexual abuse and has been incarcerated for 10 years. As you leave the room Mr. M. says to you “God must be punishing me for all the bad that I have done in my life. How am I ever going to make amends?”

This is a patient in spiritual distress. Spiritual distress is defined by the North American Nursing Diagnosis Association (NANDA) as “the disruption in the life principle that pervades a person’s entire being and that integrates and transcends one’s biological and psychosocial nature” (2001). A patient in spiritual distress loses hope, questions their belief system, or feels separated from personal sources of comfort and strength (Gulanick et al., 2003). Assisting patients to address spiritual distress is one of the competencies for nursing care of patients at the end of life established by the American Association of Colleges of Nursing (2004). Chapter 8 in the Essentials of Correctional Nursing discusses spiritual distress in the correctional population, provides cues to identify the condition and recommends nursing interventions to address spiritual distress.

To summarize nursing care for a patient in spiritual distress involves four components:

  1. A nurse-patient relationship. Patients report that their distress was relieved when the nurse cared for them as a person, not as a number; gave patients freedom of choice when possible and when the nurse listened and gave the patient a chance to talk (Creel, 2007; Sellers, 2001).
  2. Spirituality is a coping mechanism and can be used by patients to transcend illness and suffering (Emblem & Halstead, 1993).
  3. Active listening and facilitating the patient’s verbalization of concerns are skills vital to provision of spiritual care. Nurses do not need to know about specific beliefs, religions or spiritual practices to provide effective spiritual care (Martin, Burrows and Pomillo, 1983).
  4. Spiritual care resembles psychosocial care in that it involves demonstration of respect for the patient, listening and appropriate self-disclosure (Sellers, 2001; Taylor, 2003).

Nursing interventions for a patient with symptoms of spiritual distress include:

  • Developing an ongoing relationship with the patient that demonstrates trust to reinforce the patient’s connectedness to others.
  • Respect and support the patient’s faith and religious belief system by making appropriate referrals.
  • Assist the patient to sort out ethical dilemmas in health care decision making.
  • Be aware of the patient’s suffering and act to ease suffering by showing compassion.
  • Encourage reflective prayer as a means to transcend immediate experiences of pain and suffering.
  • Allow the patient to verbalize anger and fear.
  • Help the patient deal with feelings of guilt and instill hope (Villagomeza, 2005).

Pitfalls to avoid in addressing issues of spiritual distress include:

  • Trying to solve the patient’s problems or resolve unanswerable questions.
  • Going beyond the nurse’s role or expertise or imposing personal spiritual beliefs on the patient.
  • Providing premature reassurance to the patient (Lo, B. et al., 2002).

What do you think would be the best response to the questions posed by Mr. M. in the case example at the beginning of this post? How would you address his distress? For more on spiritual distress in End-of Life Care see Chapter 8 of the Essentials of Correctional Nursing which can be ordered directly from the publisher. If you use Promo Code AF1209 the price is discounted by $15 off and shipping is free.

References and Resources:

American Association of Colleges of Nursing. (2004) Peaceful death: Recommended competencies and curricular guidelines for end-of-life nursing care. Retrieved My 16, 2011 from http://www.aacn.nche.edu/Publications/deathfin.htm

American Psychosocial Oncology Society. Distress Management Training for Oncology Nurses. Retieved September 1, 2013 t http://www.apos-society.org/professionals/meetings-ed/webcasts/webcasts-ican2.aspx#.

Creel, E. (2007). The meaning of spiritual nursing acre for ill individuals with no religious affiliation. International Journal for Human Caring 11(3): 14-21.

Emblem, J. D. & Halstead, L. (1993). Spiritual needs and interventions: Comparing the views of patients, nurses and chaplains. Clinical Nurse Specialist 7(4): 175-182.

Gulanick, M. , Myers, J., Klopp, A., et al. (2003) Nursing Care Plans: Nursing Diagnosis and Intervention. 5th ed. St. Louis: Mosby

Lo, B., Ruston, D., Kates, L.W. et al. (2002). Discussing religious and spiritual issues at the end of life: A practical guide for physicians. Journal of the American Medical Association. 287(6): 749-754.

Marie Curie Cancer Care (2003). Spiritual and religious care competencies for specialist palliative care. Retrieved September 1, 2013 at http://www.mariecurie.org.uk/Documents/HEALTHCARE-PROFESSIONALS/spritual-religious-care-competencies.pdf

Martin, C., Burrows, C., & Pomilio, J. (1983). Spiritual needs of patients study. In Fish, S. & Shelly J. (Eds) Spiritual care: The nurse’s role.  Downer’s Grove, IL: Intervarsity Press.

North American Nursing Diagnosis Association. (2001) Nursing Diagnosis: Definitions and Classification. 2001-2002. Philadelphia.

Sellers, S. (2001). The spiritual care meanings of adults residing in the Midwest. Nursing Science Quarterly 14 (3): 239-249.

Taylor, E.J. (2007) What Do I Say? Talking with Patients about Spirituality. Templeton Press: Philadelphia.

Taylor, E.J. (2003). Nurses caring for the spirit: Patients with cancer and family caregiver expectations. Oncology Nursing Forum 30(4): 585-590.

Villagomeza, L. R. (2005). Spiritual distress in adult cancer patients. Holistic Nursing Practice. November/December: 285-294.

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Challenges providing end-of-life care in prisons and jails

imPossible conceptThe first prison based hospice was established in the United States in the late 1980’s.  Since then 75 hospice programs are in place in prisons and jails across the country. Most of these programs were established within the agency’s existing budget. One of the distinguishing features of the programs in correctional facilities is the use of inmates as hospice workers. Inmate hospice workers may assist patients with activities of daily living (ADLs), provide companionship, assist with relaxation techniques, run errands, provide translation or interpretation for deaf and non-English speakers and perform clerical work (MaAdoo, 2012). Hospice practices that have been adapted for use in prisons and jails include:

  • Increased family involvement made possible by modified visiting rules
  • In addition to nurses and other health care professionals the interdisciplinary treatment team includes the chaplain, a social worker, one or more members of the correctional staff, the inmate, and family as well as the hospice workers.
  • An individualized plan of care that includes structured, documented discussion about treatment options in the form of advanced care planning.
  • Skilled clinical management of pain and other symptoms as evidenced by access to analgesia used to manage pain, protocols for proper administration, and training of clinical staff in palliative care.
  • Bereavement services for patients, family, other inmates, hospice workers, and staff to cope with death and associated grief.
  • Modification of the physical environment to increase comfort and provision of special food (Craig & Ratcliff, 2002).

Nurses have often been the change agent responsible for bringing hospice care into correctional facilities and they continue to be instrumental in the adaptation of hospice practices to this population and setting. One of these nurses is Tonia Faust CCNM, RN the hospice program coordinator at Louisiana State Prison who is featured in The American Nurse by Carolyn Jones (2012).  Her interview was featured in a segment about the book done recently on the Newshour on the Public Broadcasting Service.

Is hospice care available at your correctional facility? What are some of the challenges you have experienced in providing end-of-life care in the correctional setting? The following are some challenges in developing hospice programs in correctional facilities that have been described.

There is conflict between priorities of caring for the patient and ensuring security.  This includes challenges related to trust for both inmates and staff. Staff voice concern that an inmate in pain will over-report distress to obtain narcotics or other medication that is then misused. Inmates see health care providers, including nurses as serving the goals of the criminal justice system instead of meeting the patient’s needs.  Inmates may not have sufficient health literacy to fully engage as members of the treatment team and be wary of asking for assistance. Special consideration must be given to the role of correctional officers so that they can support of end-of-life care and maintain safety and security.  Unaddressed these conflicting priorities can result in delaying access to appropriate, clinically responsive end-of-life care.

The environment is a deterrent to quality at the end of life. Housing hospice patients in a specific location such as part of the infirmary or a housing unit can create stigma, increase isolation, reduce access to programming and other privileges, prevent the patient from receiving support from friends living in general population. Another challenge with regard to the setting is that the location, even the infirmary, may not have proper equipment or supplies to deliver hospice care.

Comfort measures may be prohibited or too restrictive.   Most correctional systems prohibit staff from touching prisoners except as necessary to perform a duty.  The use of touch by staff to provide comfort in health care is usually not allowed or very restricted. In addition staffing ratios in most correctional health care programs are not rich enough for nurses to spend time comforting dying patients. The use of inmates to provide hospice care has enhanced the ability to provide comfort but this may be limited by operational needs such as lockdowns, restricted line movements, and other security measures which can reduce access to hospice workers when comfort care is most necessary.

Expression of grief is restricted.  Inmates and staff are concerned that expression of grief within the correctional setting makes them vulnerable to being taken advantage of by predatory inmates. Cultural practices within the correctional setting may not acknowledge vulnerability especially as it relates to emotions like loss and grief. Many inmates have experienced the loss of a family member and because of their incarceration were not able to make a deathbed visit or participate in the funeral or other memorial service. The inability or failure to grieve loss contributes to depression, anxiety and the inability to cope with subsequent losses.

Clinical care is inconsistent with standards for hospice and palliative care.  The normal operation of the health care program may limit the time providers can spend with patients and the patient may experience frequent changes in the care provider they are assigned. Further some facilities limit the number of problems an inmate can bring to a health care appointment. End-of-life care requires a different kind of patient provider interaction to discuss choices about life prolonging interventions, to make decisions about limiting care and to develop a plan of care that anticipates and addresses symptoms quickly and responsively. Another challenge is to ensure access to the full complement of analgesics including controlled substances and other medications used to manage pain and other distressing symptoms. Finally health care staff must be knowledgeable and skilled in the practices of palliative and end-of-life care along with all of the other areas of expertise that a correctional health care provider must have to care for this population.

What successes have you had as a correctional nurse addressing these challenges to delivery of end-of-life care? Please share your experience by responding to this post in the comments section. To order a copy of The American Nurse go to www.welcomebooks.com/americannurse. Proceeds from the sale of the book will support a scholarship fund for nurse education. For more on nursing and end-of-life care in the correctional setting see Chapter 8 in the Essentials of Correctional Nursing. The text can be ordered directly from the publisher and if you use Promo Code AF1209 the price is discounted by $15 off and shipping is free.

References:

Craig, E. & Ratcliff, M. (2002). Controversies in correctional end-of-life care. Journal of Correctional Health Care, 9, 149-157.

Howe, J.B., Scott, G. (2012) Educating prison staff in the principles of end-of-life care. International Journal of Palliative Nursing.  18(8): 391-395

Jones, C. (2012). The American Nurse: Photographs and Interviews by Carolyn Jones. Welcome Books

Knox, C. (2012). End-of- life care. In Schoenly, L. & Knox, C. Essentials of Correctional Nursing. Springer. NY.

Loeb, S.J., Penrod, J. Hollenbeak, C.S., Smaith, C.A. (2011) End of life care and barriers for female inmate.  Journal of Obstetric, Gynecological and Neonatal Nurses. 40: 477-485

McAdoo, C., Price, C. (2012) Models of Care: End-of-Life Care in Prisons. Presented at Updates in Correctional Health Care. National Commission on Correctional Health Care. May 2012. San Antonio TX. Accessed 8/12/13 at http://ncchc.sclivelearningcenter.com/index.aspx?PID=4622&SID=128752

Stone, K., Papadopoulos, I., Kelly, D. (2011) Establishing hospice care for prison populations: An integrative review assessing the UK and USA perspective.  Palliative Medicine.  26(8):969-978

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Nursing actions to relieve common symptoms associated with the end of life

man feeling painIn the last post we recommended that nurses use a standardized tool to assess patients receiving end-of-life care. Regular assessment identifies changes in the patient’s condition more reliably and effectively than using an ad hoc approach.  The patient’s input as well as the inmate’s caregiver or hospice volunteer should be sought.  A nursing assessment includes observation and evaluation of the patient’s cognition and functional ability.  The nurse should note any new or worsening symptoms and communicate these to the treatment team.

The treatment plan should anticipate symptoms and side effects expected in the patient’s near future and include order sets or treatment algorithms that nurses can use to responsively manage symptoms. Patients will experience these symptoms long before they require inpatient care and nurses can provide advice that will help inmates manage these symptoms while they are still able to live in general population. The following paragraphs describe what nurses can do to relieve common symptoms that patients with terminal illnesses will experience.

Pain is one of the symptoms that the treatment plan for any patient receiving end-of-life care should anticipate. It is the most common symptom and will increase with time. An incremental yet aggressive approach to control pain with use of analgesics and other medications is recommended.  Nurses have a key role in educating patients about pain control, what to expect, and how it can be managed with the patient’s active engagement.  This discussion should also elicit the patient attitudes and expectations about pain because these will influence the experience as well. The nurse should also identify the patient’s preferences and experience with non-pharmacologic measures that can be employed to manage pain and include these in the plan of care as well.  More information about pain management in the correctional setting can be found in Chapter 13 of the Essentials of Correctional Nursing.

Fatigue is another common symptom and will increase with time.  Nursing care to address fatigue includes ensuring the patient has assistance to carry out activities of daily living.  Activities should take place according to the patient’s preference, if at all possible, so that as fatigue sets in less important activities can be eliminated. Helping the patient to schedule the day to ensure that there is time to rest between periods of activity, encouraging mild exercise and improving the sleep environment also can address symptoms of fatigue.

Insomnia is often the cause of a related symptom, drowsiness. Nurses can assist by counseling the patient to maintain a regular sleep and wake schedule, to engage in exercise as tolerated and how to improve the sleep environment. Teaching the patient relaxation techniques such as the use of imagery or deep breathing also can assist the patient with insomnia.  Finally explore with the patient possible underlying causes (spiritual crisis, fear of incontinence or nightmares) which may suggest additional avenues to deal with the symptom. Patients who exhibit daytime drowsiness should be assessed for risk of falling and protective measures put in place to prevent falls. Some drowsiness may be an early side effect of medication rather than insomnia, if so monitor the patient closely to see if symptoms resolve or seek a change in prescription.

Nausea may be caused by the disease itself or it may be the result of treatment. An episode of nausea may be resolved initially by a day of clear liquid nourishment and then a bland, low fat diet. Nursing measures that will comfort the patient with ongoing nausea include: elevating the head of the bed, having the patient wear loose clothing, avoiding orders that trigger nausea, avoiding food that is difficult to digest, providing frequent small meals and mouth care, keeping the room temperature comfortable and increasing the air circulation.  Finally teaching relaxation techniques can assist the patient to manage the symptom. These include breathing, use of imagery and music.

Loss of appetite can be addressed by providing food and beverages that the patient prefers, providing frequent small meals and mouth care, minimizing odors that suppress appetite and providing pleasant or diversionary activity while eating.  Nurses can help patients to rest before and after eating.  Loss of appetite is a sign of impending death and important to report to the treatment team so that the patient can be supported without undue pressure to take nourishment.

Shortness of breath can be addressed by positioning the patient in a sitting position with arms resting on a table, cooling the room temperature, using a humidifier, increasing air circulation in the room and counseling the patient to breathe through pursed lips. If the patient is on oxygen and complains of dyspnea mechanical problems with the oxygen delivery system should be investigated. Teaching relaxation techniques can assist the patient to manage is symptom also. These include use of imagery, massage and music.

Anxiety and restlessness can result from the patient’s experience of these symptoms, the disease itself or from treatment of the disease.  The first nursing actions are to reassure the patient, have someone stay with the patient if possible and to make sure that the patient has the things that help them manage their ADLs such as eyeglasses, dentures hearing aids etc. Other nursing actions that can reduce anxiety include reducing sensory stimulation, re-orienting the patient to their environment, restoring the patient’s daily routine if necessary, providing a distracting activity such as reading, card playing, or television.   Nurses should also explore whether the patient is experiencing a spiritual crisis or concern that I causing anxiety and make a referral for pastoral or other counseling.

For more on nursing and end-of-life care in the correctional setting see Chapters 8 in the Essentials of Correctional Nursing. The text can be ordered directly from the publisher and if you use Promo Code AF1209 the price is discounted by $15 off and shipping is free.

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End-of-Life Care and Correctional Nursing

baby handWhat do you think are the most common causes of death among inmates? I remember the first time I looked at the information collected annually at my correctional facility and being surprised to find that cancer and heart disease were the most common causes of death.

Since 2000-2001 correctional facilities have been required to report information to the Bureau of Justice Statistics (BJS) about each inmate or detainee who dies while in custody.  Reporting includes demographic information, the inmate’s criminal background and details about the death. This information is analyzed and trends concerning inmate deaths are reported by BJS every year. According to a recent report from BJS over half of all deaths in jails and nearly 90% of all deaths in prisons were the result of illnesses like cancer, heart and liver disease (Noonan, M.E. 2012).

All of this information is to make the case that correctional nurses take care of inmates with illnesses that are life-limiting or terminal.  Therefore correctional nurses need to be competent in the delivery of end-of life care.  Here is a description from an inmate who witnessed a fellow inmate’s death from cancer

“We sat with him in his cell when we could and helped him to move and the nurse kept popping in to see him-she was upset that he had to stay there. He wasn’t allowed any morphine to kill his pain and died a few days later in agony in his cell and alone (Prison Reform Trust, 2008, p. 4)”. 

Can you imagine what the nurse was feeling while providing care to this inmate during his last days? To watch a patient die and to know you could do better is a powerful incentive to improve. As Susan Loeb and her colleagues point out it is time to harness nurse’s expertise and apply their power of compassion to allow prisoners “to die with a modicum of dignity, respect, and humane care” (2011, p. 483).

Nursing care of inmates with terminal illness includes:

  • Assisting patients to make decisions about treatment, palliative care and life sustaining measures
  • Effectively addressing patient concerns, especially symptom management
  • Coordinating care among multiple providers
  • Communication with the patient’s family and other members of the health care team.

Resources for nurses to gain knowledge and skill in end-of-life care can be accessed through local hospice in the community or at a nearby university. A national education initiative, the End-of Life Nursing Consortium (ELNEC) has made training available to nurses in all 50 states and 77 other countries since 2000 and has many resources on the website at http://www.aacn.nche.edu/elnec. The ELNEC also has established competencies for end-of-life nursing care. The GRACE Project (Guiding Responsive Action in Corrections at End of Life) sponsored by the Volunteers of America has been responsible for supporting the establishment of hospice and end-of-life care in more than 75 prisons and jails in America.  The Central Plains Geriatric Education Center at the University of Kansas Medical Center is continuing to emphasize the development of capacity to provide end-of-life care and the education of health care providers to deliver this care in prisons and jails (McAdoo & Price 2012). To access this resource go to http://www.kumc.edu/landon-center-on-aging/central-plains-geriatric-education-center.html or call 913 588 1464.

“Assessment and then intervention to relieve distressful symptoms is a major role of nurses in end-of-life care” (Knox 2012, p. 145). Use of a standardized assessment tool is recommended.  One assessment tool that is available on-line is the Edmonton Symptom Assessment System-Revised. It assesses nine of the most common symptoms experienced by patients at the end of life.  What do you think these symptoms are and how would you address each of them?

For more on nursing and end-of-life care in the correctional setting see Chapters 8 in the Essentials of Correctional Nursing. The text can be ordered directly from the publisher and if you use Promo Code AF1209 the price is discounted by $15 off and shipping is free.

References and Resources:

Howe, J.B., Scott, G. (2012) Educating prison staff in the principles of end-of-life care. International Journal of Palliative Nursing.  18(8): 391-395

Knox, C. (2012). End-of- life care. In Schoenly, L. & Knox, C. Essentials of Correctional Nursing. Springer. NY.

Loeb, S.J., Penrod, J. Hollenbeak, C.S., Smaith, C.A. (2011) End of life care and barriers for female inmate.  Journal of Obstetric, Gynecological and Neonatal Nurses. 40: 477-485

McAdoo, C., Price, C. (2012) Models of Care: End-of-Life Care in Prisons. Presented at Updates in Correctional Health Care. National Commission on Correctional Health Care. May 2012. San Antonio TX. Accessed 8/12/13 at http://ncchc.sclivelearningcenter.com/index.aspx?PID=4622&SID=128752

Noonan, M. E. (2012) Mortality in Local Jails and State Prisons, 2000-2010- Statistical Tables. Bureau of Justice Statistics. Retrieved August 8, 2013 from http://www.bjs.gov/content/pub/pdf/mljsp0010st.pdf.

Prison Reform Trust. (2008) Doing time: the experiences and needs of older people in prison. Prison Reform Trust: London.

Stone, K., Papadopoulos, I., Kelly, D. (2011) Establishing hospice care for prison populations: An integrative review assessing the UK and USA perspective.  Palliative Medicine.  26(8):969-978

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