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Reflections of a critical care nurse regarding termination of life-sustaining support.



SUMMARY

* Prolongation of life is expected nowadays because of advances in technology and medical treatment. This paper presents a case study based discussion around the ethics of withdrawal of life support.

* Death of a child is often regarded as the most painful, stressful, and enduring bereavement Bereavement Definition

Bereavement refers to the period of mourning and grief following the death of a beloved person or animal. The English word bereavement
 experience.

* If life-sustaining support causes more harm than benefit for the patient, then healthcare professionals may be justified in suggesting the withholding or withdrawal of treatment.

* The best ways that healthcare professionals can support a grieving family are by offering a non-judgmental, deep sense of caring and personal involvement.

* In order to provide high-quality care to patients and their families during the transition at the end-of-life, nurses should promote comfort, communicate effectively and compassionately, assess and treat multiple dimensions, and assist patients, and patients' families ability to cope with suffering, grief, loss, and bereavement.

Key words: critical care * decision-making * end-of-life * ethics * grief * life-sustaining support.

INTRODUCTION

In Hong Kong Hong Kong (hŏng kŏng), Mandarin Xianggang, special administrative region of China, formerly a British crown colony (2005 est. pop. 6,899,000), land area 422 sq mi (1,092 sq km), adjacent to Guangdong prov. , the neonatal unit (NNU NNU Northwest Nazarene University (Nampa, Idaho)
NNU Neural Network Utility
) in the hospital where I (SYW SYW So You Wanna ....
SYW Seven Years' War
SYW Synod Youth Workshop
) work is divided into a neonatal intensive care unit Noun 1. neonatal intensive care unit - an intensive care unit designed with special equipment to care for premature or seriously ill newborn
NICU

ICU, intensive care unit - a hospital unit staffed and equipped to provide intensive care
 (NICU NICU
abbr.
neonatal intensive-care unit
) and a special care baby unit (SCBU SCBU Special Care Baby Unit
SCBU Strategic Consulting Business Unit
). NICU, an 18-bed unit, is the unit for ventilated ven·ti·late  
tr.v. ven·ti·lat·ed, ven·ti·lat·ing, ven·ti·lates
1. To admit fresh air into (a mine, for example) to replace stale or noxious air.

2.
 and/or critically ill neonates and SCBU, a 60-bed unit, is the step down unit from the NICU for non-ventilated and relatively stable patients. The admission criteria admission criteria

the rules for the establishment of comparable groups in any comparison of differences in the performance or responses of the group. The criteria may be permissible age group, the previous productivity, the freedom from disease and so on.
 for NICU and SCBU are based on medical decisions and no objective indicators are used. Nurses are rotated to work in both units, NICU and SCBU, in order to have an equal opportunity to care for critically ill babies. In order to promote the comprehensive experience for caring of the sick neonates, all nurses working in the NNU will receive four weeks' training. The duration of training is based on the administrative decision of the unit, taking into account manpower availability.

Working in the ICU ICU intensive care unit.

ICU
abbr.
intensive care unit



ICU

see intensive care unit.

ICU 
 setting, it is not uncommon to care for dying patients and death is not a rare event. However, there was an incident in which I (SYW) was involved, where a baby died following a planned extubation (when the child was not expected to survive), which caused me to examine my role in patient care during this crucial period, at the end of a patient's life.

Incident

Judy (a pseudonym pseudonym (s`dənĭm) [Gr.,=false name], name assumed, particularly by writers, to conceal identity. A writer's pseudonym is also referred to as a nom de plume (pen name). ), a term neonate neonate /neo·nate/ (ne´o-nat) newborn infant.

ne·o·nate
n.
A neonatal infant.



neonate

a newborn animal.
, was admitted to SCBU at two days old because of repeated vomiting. After Judy's admission, she had faecal fae·cal  
adj. Chiefly British
Variant of fecal.

Adj. 1. faecal - of or relating to feces; "fecal matter"
fecal
 vomitus vomitus /vom·i·tus/ (vom´i-tus) [L.]
1. vomiting.

2. matter vomited.


vom·i·tus
n.
Vomited matter.



vomitus

1. vomiting.

2. vomited material.
. As a result, she then had a rectal biopsy and soon after the biopsy, which resulted in the diagnosis of Hirschprung's disease, she had several operations during which large proportion of non-functioning bowel was removed and an ileostomy ileostomy /il·e·os·to·my/ (il?e-os´tah-me) surgical creation of an opening into the ileum, with a stoma on the abdominal wall.

il·e·os·to·my
n.
1.
 was formed. Her remaining bowel had poor function, which meant that her feeding needed to be maintained using parenteral nutrition Parenteral nutrition
Nutrition supplied intravenously, thus bypassing the patient's digestive tract entirely.

Mentioned in: Electrolyte Supplements, Necrotizing Enterocolitis

parenteral nutrition 
.

Although Judy was born following a well-planned pregnancy and every family member was delighted at her birth, her poor prognosis became a nightmare for her parents; but they always hoped for a miracle. Judy was cared for in NICU for nine months, and during this time the NICU nurses became very attached to Judy. I grew very attached to her; she had such a beautiful smile.

At nine months old, Judy collapsed unexpectedly and suffered cardiac arrest cardiac arrest
n.
Abbr. CA A sudden cessation of cardiac function, resulting in loss of effective circulation.


Cardiac arrest
A condition in which the heart stops functioning.
. After active resuscitation resuscitation /re·sus·ci·ta·tion/ (-sus?i-ta´shun) restoration to life of one apparently dead.

cardiopulmonary resuscitation
, she was intubated and ventilated. She also required aggressive inotropic inotropic /in·o·tro·pic/ (in´o-tro?pik) affecting the force of muscular contractions.

in·o·trop·ic
adj.
Affecting the contraction of muscle, especially heart muscle.
 support. Because the collapse happened so suddenly, her parents were very shocked. A few days later, Judy's mother began to ask questions about whether it would be appropriate to extubate Judy and remove her ventilatory support, as she and her husband did not want her to suffer. The parents had then consulted two doctors, who had been taking care of Judy, for advice. Unfortunately, the two doctors had differing points of view. One agreed with the parents and suggested that they should decide what would be the best for Judy. The other doctor insisted that the parents had no right to terminate Judy's life. Not surprisingly, these discussions made Judy's parents feel confused, to the point that they had no idea about what would be best to do for the benefit of Judy.

Supporting the parents

Healthcare providers and family members hold many different points of view about withdrawing life support from a patient Burns et al., 2001). In Judy's case, at times I felt she was suffering. felt this because, even though she was sedated using fentanyl fentanyl /fen·ta·nyl/ (fen´tah-nil) an opioid analgesic; the citrate salt is used as an adjunct to anesthesia, in the induction and maintenance of anesthesia, in combination with droperidol (or similar agent) as a neuroleptanalgesic, and  and midazolam intravenous infusions, she still appeared to be in pain when we provided care to her. I remember one time when changed her ileostomy bag, her facial expression facial expression,
n the use of the facial muscles to communicate or to convey mood.
 told me that she was in great pain, especially when I touched her raw skin. If I was asked to rate Judy's pain on a 1 to 10 numerical pain scale, where 1 refers to no pain and 10 refers to the greatest pain, I would rate her pain level at 10 for that incident and rate her average pain level at 5 to 7. Judy's father yelled at me on that occasion because he thought I had made his daughter suffer.

NICU parents often experience panic, grief, guilt, helplessness, and anger; it is a major life challenge for them to cope when their sick baby is admitted to ICU (Dyer, 2005). Today, nurses promote holistic care, which includes the physical, psychological, social and spiritual well-being spiritual well-being,
n a sense of peace and contentment stemming from an individual's relationship with the spiritual aspects of life.
 of the clients as well as their significant others (Crawford & Hickson, 2002). In fact, healthcare professionals are prepared to share in the grief, loss, and fear experienced by families so as to provide beneficent be·nef·i·cent  
adj.
1. Characterized by or performing acts of kindness or charity.

2. Producing benefit; beneficial.



[Probably from beneficenceon the model of such pairs as
 end-of-life care (Romesberg, 2004).

Although Judy was still hospitalised in NICU, the state of her impending im·pend  
intr.v. im·pend·ed, im·pend·ing, im·pends
1. To be about to occur: Her retirement is impending.

2.
 death created great stress and a feeling of loss to her parents. As nurses we felt it was very important to not only provide care for Judy, but to her parents also. Updating them about her condition, allowing them time for questions, answering their questions and concerns, and staying with them whenever possible were the supportive measures offered by NICU nurses. Despite all the support that nurses could offer, Judy's parents sometimes still acted restlessly and agitated ag·i·tate  
v. ag·i·tat·ed, ag·i·tat·ing, ag·i·tates

v.tr.
1. To cause to move with violence or sudden force.

2.
 during visiting. They were often distant from the healthcare workers and asked questions in an angry tone.

Judy parents' reaction and anger toward healthcare workers was familiar to me as I had experienced similar reactions and anger when my younger brother Wiki is aware of the following uses of "'Younger Brother":
  • Younger Brother (music group)
  • Younger Brother (Trinity House) - a title within the British organisation, Trinity House
 died from leukaemia. I shared my personal experiences with them and offered emotional support because it was hard for them to go through this critical stage. Nurses cannot make decisions for patients and their families, but nurses can tell families how they feel about a particular end-of-life situation. Without imposing their will, nurses can express their view in a genuine, open manner that provides families some guidance, based on our understanding of their wishes. No one can cure the grief that arises when people lose someone dear to them (Levy, 2001).

Comfort care, including provision of warmth, close physical contact, nutritional support nutritional support,
n the supply of foods and liquids necessary to advance healing and support health.
, sedation Sedation Definition

Sedation is the act of calming by administration of a sedative. A sedative is a medication that commonly induces the nervous system to calm.
Purpose

The process of sedation has two primary intentions.
 and pain management should be given to any critically ill child. However, supporting the parents is equally important and their needs may be physical, emotional, social, cultural and spiritual (Stringer et al., 2004). The needs of Judy's parents were basically for physical comfort and psychological support during this critical period. And, it is important for nurses to recognise and accept that families need to feel what they feel regardless of how irrational others may perceive it to be (Romesberg, 2004).

Even though the parents had been informed that Judy's condition would not improve and that no treatment would alter the outcome, they continued to ask questions several times every day regarding her condition and prognosis. They may have been holding on to a hope that continuation of supportive treatment would provide a chance for their daughter to be cured.

With the advancement of technology, people expect to live longer, and prolongation of life is possible these days because of complex diagnostic and curative technologies. I believe that death of an elderly person is far more acceptable to society than the death of a child, which is often regarded as the most painful, stressful, and enduring bereavement experience (Romesberg, 2004). This may explain, to some extent, why many family members find it difficult to accept withdrawing or withholding life-sustaining treatment where children are concerned.

Ethical issues

Quality of life is at the core of patient care, especially focusing on interventions to limit the patient's suffering. Quality of life has been defined as the quality of total well-being including both physical and psychosocial determinants (Stutts & Schloemann, 2002). If the patient's quality of life cannot be assured, or if the treatment will produce more harm than benefit for the patient, the caregiver may be justified in suggesting the withholding or withdrawal of treatment (Stutts & Schloemann, 2002). This is the ethical principle of beneficence beneficence (b·neˑ·fi·s . However, for families, if life-sustaining support is continued, they may still have time to experience a relationship with the patient. It allows time for them to be with their relative and this sustains their hope for a miracle, until they are more able to come to terms with the reality of the prognosis. On the other hand, for an infant as young as Judy, pain and symptom management were the major concerns, from the patient's perspective.

Nurses and other healthcare professionals bear the ethical responsibility to protect the rights and interests of patients. In order to understand the ethics of end-of-life care, the purpose or goal of end-of-life care should be examined. As noted above, due to medical advancements, the public's expectations of achieving a positive health outcome is high. However, if life-sustaining treatment only lengthens a patient's life (with no expectation that the patient is likely to survive) and in addition causes suffering, healthcare professionals should consider discussing withdrawal of treatment with the family, in order to promote a peaceful death.

My personal belief is that everyone has the right to die with dignity regardless of his or her age. Futhermore, patients should be treated with respect and dignity, both during and after the dying process (Truog et al., 2001; Roberts & Boyle, 2005). Life-sustaining support includes pharmacologic, haemodynamic and ventilatory support; the continuing need for which should be evaluated regularly, especially if the patient experiences severe pain, discomfort and suffering. But who has the right to determine withdrawal of treatment from a patient? According to according to
prep.
1. As stated or indicated by; on the authority of: according to historians.

2. In keeping with: according to instructions.

3.
 Goh and Mok (cited Crawford & Hickson, 2002), clinically experienced practitioners, basing their predictions on evidence, can and usually do make ethically sound decisions. Of course, although it is not always the case (as illustrated by my example, above), this decision should ideally be agreed with and supported by family members.

Agreement by the family members about the withdrawal of life-sustaining support is usually based on how they perceive the unalterable condition of the patient, and in this regard it is important that medical professionals provide clear and comprehensive and unambiguous information to the family.

Law and ethics in Honk honk Pediatrics A widely-transmitted precordial whoop, described as a high-pitched, musical, late systolic murmur in some Pts with mitral valve prolapse–MVP, a sound attributed to resonation of the valve leaflets and chordae; non-honkers with MVP may be made  Kong

Since there is no law or official medical guideline A medical guideline (also called a clinical guideline, clinical protocol or clinical practice guideline) is a document with the aim of guiding decisions and criteria in specific areas of healthcare, as defined by an authoritative examination of current evidence  regarding withdrawal of life-sustaining treatment from children in Hong Kong, medical professionals are in a difficult position and ethical dilemmas may arise when the healthcare team and the patient's family have different ideas about which decision is in the child's best interest (Stutts & Schloemann, 2002). Even though parents have the autonomy to make the treatment decision for their infant based on the presumption that they will look for the best interest and well-being of their child (Stutts and Schloemann, 2002), the decision to withdraw life support should never rest with the parents alone, as they might be made to feel directly responsible for bringing about their child's death (Fetus and Newborn Committee & Canadian Paediatric Society The Canadian Paediatric Society, or CPS, is a national advocacy association committed to the health needs of children and youth. Since 1922, the CPS has worked to:
  • advocate for the health and well-being of children and youth;
, 2001). The burden of decision-making may be reduced, from the parents' perspective, by emphasising that everybody's concerns have the best interests of the baby at heart.

In the UK, the Royal College of Paediatrics and Child Health Royal College of Paediatrics and Child Health in London is responsible for the training of postgraduate doctors in paediatrics and conducting the MRCPCH membership exams. They also conduct the Diploma in Child Health exam, which is taken by many doctors who plan a career in General  (RCPCH RCPCH Royal College of Paediatrics and Child Health (UK) ) published a framework for practice regarding withholding or withdrawing life-sustaining treatment in children. Advising withdrawing or withholding treatment is one of the most difficult areas of clinical practice (RCPCH, 2004). In order to fulfil the medical professional responsibilities in this aspect, this framework provides directions to help all healthcare professionals, children and families to come to the right conclusions.

DISCUSSION

According to the RCPCH (2004), there are five situations where it may be ethical and legal to consider withholding or withdrawal of life-sustaining medical treatment. The five situations are brain death, permanent vegetative state Vegetative State Definition

A coma-like state characterized by open eyes and the appearance of wakefulness is defined as vegetative.
Description

The vegetative state is a chronic or long-term condition.
, no chance to recover from a severe illness, a no purpose situation with severe physical or mental impairment, and an unbearable situation in which progressive and irreversible illness cannot be borne.

It was painful for Judy's parents to have to make a decision about the life of their child but they felt knew what was best for Judy. However, because Judy had such a severe illness that there was no chance that she would recover, and life-sustaining treatment would simply delay her death without significant alleviation of her suffering, the decision that they made was congruent with the framework suggested by the RCPCH (2004).

During Judy's stay in NICU, despite episodes of distance and anger such as that described above, the nurses built up a trusting relationship with her parents. This relationship encouraged a partnership between nurses and the parents during the period of Judy's end-of-life care. This was particularly important at the time when the parents were asked to accept the situation and to make the decision to withdraw treatment. They needed time and space to consider what was best for Judy.

As healthcare providers, we should always try to respect the parents' wishes and give them support, no matter what their decision is. However, this respect and support is not unconditional, and it is the parents' duty to decision-make from the point of view of the child's best interests, as opposed to their own. Families often need to be reassured about the decisions they have reached, and it should be emphasised to them that the responsibility for these decisions is shared between the family and the healthcare team. This can help to dispel lingering doubts and potential feelings of guilt (Truog et al., 2001).

The parents' decision

During the last few day of Judy's life, her parents struggled with their decision, and they were in deep pain during the whole time. Nurses in the unit counselled them and were able to offer support and comfort even though some nurses were not Judy's case nurses; considerable empathy was demonstrated by the staff.

Finally, Judy's parents came to the decision that her quality of life was unacceptable and that death was inevitable. A planned process of withdrawal of care was discussed. Ideally, when a death is expected and a do-not-resuscitate order is made, planned withdrawal of support can facilitate a more peaceful and less painful death for the patient and the family (Roberts & Boyle, 2005). After extubation, to respect their privacy and confidentiality, Judy and her parents were cared for in a private room until her last moments. The best way a health professional can support a grieving family is by offering a non-judgmental, deep sense of caring and personal involvement. This is what we attempted to provide for Judy and her family.

Reflections

Although medical advancements can lengthen the life of a terminally ill Terminally Ill

When a person is not expected to live more than 12 months.

Notes:
Any gifts given out by the afflicted person at this time may be considered as a dispersion of the estate rather than a gift.
 patient, their quality of life may not be improved. As nurse, I have a duty to do 'good' to patients. Ethical principles such as beneficence, non-maleficence, truth telling and autonomy can be applied in Judy's case. Beneficence is the ethical principle of doing 'good' for the patient. In this context, the extubation decision was made to reduce Judy's suffering. Non-maleficence means doing no harm. In this respect, adequate analgesia analgesia /an·al·ge·sia/ (an?al-je´ze-ah)
1. absence of sensibility to pain.

2. the relief of pain without loss of consciousness.
 and sedation were provided to Judy to allow her to die without pain.

Parents should be kept updated about their child's condition and the expected changes during the last stage of life. The last principle is autonomy, which in this case is regarded as parental autonomy to make the decision to withdraw life-sustaining support. Compared with other types of bereavement, parental grieving may be particularly intense, complicated and long lasting. They have a difficult transition to make. All parents expect to have a healthy baby during their pregnancy. However, if their baby dies, they often lose hope, and with it their sense of a future (Fetus and Newborn Committee & Canadian Paediatric Society, 2001). Thus, while caring for the needs of critically ill babies, nurses need to meet parents' psychological needs also.

In a situation where an infant dies nurses have a critical role and can promote optimal comfort for the dying baby such as provision of warmth, provision of adequate sedation and pain relief, and minimal prescriptive handling if possible. Additionally, the care provided to the dying child must be family centred (Poor & Poirrier, 2001). Family-centred care is an approach to plan, deliver, and evaluate healthcare that is grounded in mutually beneficial partnerships between healthcare providers, patients, and patients' families. The infant's family may include parents, siblings, and their extended family, all of whom have diverse needs.

In order to provide high-quality care to patients and their families during the transition at the end-of-life, nurses should promote the provision of comfort care to the dying as an active, desirable, and important skill and an integral component of nursing care. Effective communication and compassion are essential when dealing with patients, patients' families, and members of the healthcare team about end-of-life issues. It is also important to assess and treat multiple dimensions, including physical, psychological, social, and spiritual needs to improve quality at the end-of-life, and last but not the least, assist patients, patients' families to cope with suffering, grief, loss, and bereavement in end-of-life care (Roberts Boyle, 2005). Nurses can encourage parents to spend more time with their baby, participating actively in their care whenever they wish. A single room, if available, should be provided in order to allow them to share their last moments together (Truog et al., 2001).

In conclusion, withdrawal of treatment from an infant and the end-of-life care process are complex matters. Whatever the context, the patient's best interests should always be prioritised in order to avoid suffering and to promote a comfortable death.

References

Burns JP, Mitchell C, Griffith JL, & Truog RD. (2001) End-of-life care in the pediatric pediatric /pe·di·at·ric/ (pe?de-at´rik) pertaining to the health of children.

pe·di·at·ric
adj.
Of or relating to pediatrics.
 intensive care unit: attitudes and practices of pediatric critical care physicians and nurses. Critical Care Medicine 29 (3), 658-664.

Crawford D, Hickson W. (2002) An Introduction to Neonatal Nursing Care, 2nd edition. UK, Nelson Thornes.

Dyer KA. (2005) Identifying, understanding, and working with grieving parents in the NICU, Part 1: identifying and understanding loss and the grief response. Journal of Neonatal Nursing 24 (3), 35-44.

Fetus and Newborn Committee and Canadian Paediatric Society. (2001) Guidelines for Health Care Professionals Supporting Families Experiencing a Perinatal Loss. Paediatric Adj. 1. paediatric - of or relating to the medical care of children; "pediatric dentist"
pediatric
 and Child Health 6 (71), 469-477.

Levy MM. (2001) End-of-life care in the intensive care unit: can we do better? Critcal Care Medicine 29 (Suppl. 2), N56-N61.

Poor B, Poirrier GP. (2001) End of Life Nursing Care. Sudbury, Jones & Bartlett.

Roberts KE, Boyle LA. (2005) End-of-life education in the paediatric intensive care unit. Critical Care Nurse 25 (1), 51-59.

Romesberg TL. (2004) Understanding grief: a component of neonatal palliative care palliative care (paˑ·lē·ā·tiv kerˑ),
n an approach to health care that is concerned primarily with attending to physical and emotional comfort rather
. Journal of Hospice and Palliative Nursing 6 (3), 161-170.

Royal College of Paediactrics and Child Health. (2004) Withholding or withdrawing life sustaining treatments in children: A framework for practice, 2nd edition. UK, Royal Colleague of Paediatrics and Child Health.

Stringer M, Shaw VD, Savani RC. (2004) Comfort Care of Neonates at the End of Life. Journal of Neonatal Nursing 23 (5), 41-46.

Stutts A, Schloemann J. (2002) Life-sustaining support: ethical, cultural, and spiritual conflicts Part 1: family support--a neonatal case study. Journal of Neonatal Nursing 21 (3), 23-31.

Truog RD, Cist AFM (Atomic Force Microscope) A device used to image materials at the atomic level. AFMs are used to solve processing and materials problems in electronics, telecom, biology and other high-tech industries. , Brackett SE, Burns JP, Curley MAQ MAQ Maximizing Access and Quality (USAID initiative)
MAQ Mortgage Advice Qualification
MAQ Maximum Annual Quantity (gas)
MAQ Medication Adherence Questionnaire
MAQ Marine Art Quarterly
, Danis M, DeVita MA, Rosenbaum SH, Rothenberg DM, Sprung CL, Webb SA, Wlody GS, Hurford WE. (2001) Recommendations for end-of-life care in the intensive care unit: The Ethics Committee ethics committee A multidisciplinary hospital body composed of a broad spectrum of personnel–eg, physicians, nurses, social workers, priests, and others, which addresses the moral and ethical issues within the hospital. See DNR, Institutional review board.  of the Society of Critical Care Medicine. Critical Care Medicine 29 (12), 2332-2348.

Sau Yan Wan RN; BHS BHS

beta-hemolytic streptococci.
(N), Registered Nurse, Neonatal Unit, Prince of Wales Hospital
This article is about a hospital in Hong Kong. For the hospital in Sydney, Australia, see Prince of Wales Hospital, Sydney. There also exists another Prince of Wales Hospital in the United Kingdom.
, Hong Kong * Sek Ying Chair RN; MBA MBA
abbr.
Master of Business Administration

Noun 1. MBA - a master's degree in business
Master in Business, Master in Business Administration
, PhD, Assistant Professor, The Nethersole School of Nursing, The Chinese University of Hong Kong The motto of the university is "博文約禮" in Chinese, meaning "to broaden one's intellectual horizon and keep within the bounds of propriety". , Hong Kong.

E-mail: sychair@cuhk.edu.hk
COPYRIGHT 2006 Connect Healthcare Publishing Ltd.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 2006 Gale, Cengage Learning. All rights reserved.

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Title Annotation:CLINICAL CONNECTIONS
Author:Wan, Sau Yan; Chair, Sek Ying
Publication:Connect: The World of Critical Care Nursing
Geographic Code:9HONG
Date:Apr 1, 2006
Words:3381
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