In pediatric healthcare settings, child life specialists typically provide support and facilitate open communication to patients, siblings, and families regarding the topics of life-threatening illnesses and the potential of death. Unfortunately, in the adult healthcare world, child life services are not always readily available by consultation and therefore, families with children sometimes struggle to discuss a parent’s life-threading illness and potential death (Sutter & Reid, 2012). In adult healthcare, the adult interdisciplinary palliative medicine team may feel unprepared, or even uncomfortable, in facilitating open communication with children—even though this aids in coping, and reduces anxiety, depression, and behavior problems (Sutter …show more content…
& Reid, 2012). The current study from 2012 aimed to describe a pilot consultation service where consultations were made for child life services for the children of seriously ill adult patients (Sutter & Reid, 2012). The current pilot study was completed in a university medical center. This article mainly followed AA, a 54-year-old man who required life-sustaining medical interventions after a farming accident, and his family, which was composed of his wife and his three children ranging in ages 7-15-year-old (Sutter & Reid, 2012).
Many of his family member’s concerns revolved around how to talk to the children when they were also dealing with a loss. Additionally, AA’s wife required emotional support and assistance in choosing the words to use when telling the children that their father was going to die (Sutter & Reid, 2012). AA’s wife not only struggled to explain AA’s condition to her children, but also was concerned with how to support each child appropriated (different ages, coping styles, and temperaments). At this point, a child life specialist was consulted for help. Parents are often unsure of how to discuss their/their loved one’s illness with their children, they don’t know the appropriate words to use, how to explain treatments, side effects, or the possibility of death (Sutter & Reid, 2012). All of these factors add additional stress to an already stressful situation, and this stress can be transmitted to the children. Children of adult patients facing terminal illness may experience confusion, anxiety, …show more content…
developmental regression, and may require more emotional support. Approximately 25% of children of adult patients facing terminal illness experience anxiety, sleep disturbances, poor concentration/focus, or difficulties at school (Sutter & Reid, 2012). When AA’s children arrived, the child life specialist completed an informal assessment (developmental age, temperament, and coping styles) and supported/assisted their mother in a developmentally appropriate explanation of their father’s illness and probable death.
The child life specialist encouraged the children to think about if they would like to see their father and what they would like to do/say to their father prior to his death (Sutter & Reid, 2012). Adult staff often do not feel prepared or comfortable to discuss support needs of children, as they lack the experience and training to do so with children. This is when a child life specialist can be consulted, to assist in these conversations and this process. When the children returned for a final visit prior to the removal of life-sustaining interventions from their father, they were each offered a choice of visiting AA and final tasks they hoped to achieve were discussed (Sutter & Reid, 2012). Each child had different personal preferences and was given the choice and control to make their own decisions regarding these opportunities. Referrals and consultation to child life services were often beneficial when milestone events in patient care occurred (e.g., difficult explaining prognosis to a child, abrupt decline in health, relapse, or inevitable death), or when there were reports of poor coping, developmental regression,
questions, or needs for emotional support (Sutter & Reid, 2012). When child life services were consulted, interventions varied and were based on the child’s developmental level, temperament, and coping style. Child life spoke with the family members and the healthcare team members to determine what the children already knew and how they responded to the information (Sutter & Reid, 2012). With this pilot study, child life consultation services were successfully incorporated into the palliative medicine program with adult services with uniformly positive feedback—from both staff and families (Sutter & Reid, 2012). The authors of this pilot study explain that child life services in adult medicine has not been studied yet and calls future researchers to continue to study these services and their effectiveness, and in turn compare them to the effectiveness of structured developmentally based training with other adult palliative medicine team members (Sutter & Reid, 2012). The implications of this study can be quite useful for child life specialists working in an adult and children’s hospital. The current study exemplifies that child life services are beneficial and effective in helping to explain a parent’s life-threatening illness or death. While other healthcare team members may feel uncomfortable discussing this with children, a child life specialist has completed special training in facilitating open communication about serious illnesses and death across developmental ages. A primary objective of child life is to help children and families cope with the stress and uncertainty of illnesses. Through this intervention, child life specialists are able to help children to understand and cope with their parent’s illness and/or death. To achieve these objectives, while taking the results of the current study into account, child life specialists can work to implement these interventions and collaborate with adult staff to aid these children and families during difficult times. Child life specialists need to be cognizant of these results, put them into practice, and advocate for consultation from adult services. More specifically, I believe this article directly ties to my internship experience at Norton Women’s and Children’s Hospital. While at Women’s and Children’s, I have had the opportunity to see child life consultations being utilized by adult units, not necessarily for deaths but for life-threatening illnesses. For example, during my first day, Kristi and I met a grandmother who was recently diagnosed with cancer and wanted us to talk to her granddaughter. Another example occurred more recently, where the adult ICU consulted child life to work with a patient’s son and his fiancé’s son. The current study allowed me to see that the collaboration of the entire multidisciplinary healthcare team is important and that our services are appreciated and beneficial. Each healthcare team member has their expertise, and when we all come together we can see the bigger picture. I believe that this is an important article to read as an emerging child life specialist, because it allows me to see the importance of collaboration, programming, research, policy creation, and consultation in child life practice. Overall, this article helps to provide results which can aid in providing evidence-based practice in child life services in regard to aiding adult patients with children.
...the patient’s family more within the assessment after obtaining the patients consent, but my main aim in this case was to concentrate the assessment, solely on the patient, with little information from the family/loved ones. This is a vital skill to remember as patients family/loved ones can often feel unimportant and distant toward nursing staff, and no one knows the patient better than they do, and can tell you vital information. Therefore involvement of family/ carers or loved ones is sometimes crucial to patient’s further treatment and outcomes.
End of Life Care involves choices such as hospice some instances, if that is what the patient chooses. Hospice involves that of palliative care, where health care professionals instead of treating the illness treat the patient they help to keep them comfortable and eliminate pain (Allender, Rector & Warner 2010). The choice of a patient’s end of life care is often considered after the diagnosis of a terminal illness, and the patient is able to decide how they would like to spend the rest of their days. Adolescence is characterized by a time of growing and finding ones self, which makes the debate about whether or not an adolescent should be able to make a decision about their own health care.
Being in hospice care is a better alternative than being stuck in the hospital to try to avoid the unavoidable. Common misconceptions about Hospice could include that hospice makes life more miserable; however, a physician expressed his findings in Hospice,“You can only fail a patient if you fail to understand and respond to their needs. We may not be able to cure all of our patients, but if we can make them comfortable in the last moments of their lives, we will not have failed them”..Hospice care gradually emerged in the 1970s, when groups like the National Hospice Organization were formed “in response to the unmet needs of dying patients and their families for whom traditional medical care was no longer effective.”Herbert Hendin, an executive director of the American Suicide Foundations illustrates a story of a young man diagnosed with acute myelocytic leukemia and was expected to have only a few months before he died. He persistently asked the doctor to assist him, but he eventually accepted the medical treatment. His doctor told him he can use his time wisely to become close to his family. Two days before he died, Tim talked about what he would have missed without the opportunity for a
The preface focuses on the type of care Hospice provides for the patient and family, while the section entitled "Hospice is..." provides a detailed definition of hospice.Chapter One demonstrates the sensitivity a hospice nurse must use when dealing with new patients and how the nurse must remain unbiased at all times. Chapter Two reviews the family emotional strains and stresses which can be experienced when a loved one is dying within the home and how different people deal with the change. In Chapter Three we can develop a deeper understanding of an individual's strength and acceptance through the story of Karen, a seven year old who is dying from cancer. The different coping mechanisms expressed by Karen's parents are very contrast dramatically as the needs of survivors vary.Chapter Four highlights patients' need for control and decision making over his or her own life. In Chapter Five, Henrietta, the patient had very little control over her treatment and pain because her husband refused to accept her dying, until Janice (hospice nurse) promised her dignity during death. In Chapter Six, William tries a new method of pain control and his spirits are lifted as he once again has some control in his life as expressed in his statement, "I can't believe the power I have"(1, p.194).
Thanks in part to the scientific and technological advances of todays’ society, enhanced medicinal treatment options are helping people battle illnesses and diseases and live longer than ever before. Despite these advances, however, many people with life threatening illnesses have needs and concerns that are unidentified and therefore unmet at the end of life, notes Arnold, Artin, Griffith, Person and Graham (2006, p. 62). They further noted that when these needs and concerns remain unmet, due in part to the failure of providers to correctly evaluate these needs, as well as the patients’ reluctance to discuss them (p. 63, as originally noted by Heaven & Maguire, 1997), a patient’s quality of life may be adversely affected. According to Bosma et al. (2010, p. 84), “Many generalist social work skills regarding counseling, family systems, community resources, and psychosocial assessments are relevant to working with patients and families with terminal illness”, thereby placing social workers in the distinctive position of being able to support and assist clients with end of life decisions and care planning needs. In fact, they further noted that at some point, “most social work practitioners will encounter adults, children, and families who are facing progressive life limiting illness, dying, death, or bereavement” (p. 79).
When it comes to a bad diagnosis it is often difficult for doctors to tell their patients this devastating news. The doctor will likely hold back from telling the patient the whole truth about their health because they believe the patient will become depressed. However, Schwartz argues that telling the patient the whole truth about their illness will cause depression and anxiety, but rather telling the patient the whole truth will empower and motivate the patient to make the most of their days. Many doctors will often also prescribe or offer treatment that will likely not help their health, but the doctors do so to make patients feel as though their may be a solution to the problem as they are unaware to the limited number of days they may have left. In comparison, people who are aware there is no cure to their diagnosis and many choose to live their last days not in the hospital or pain free from medications without a treatment holding them back. They can choose to live their last days with their family and will have more time and awareness to handle a will. Schwartz argues the importance of telling patients the truth about their diagnosis and communicating the person’s likely amount of time left as it will affect how the patient chooses to live their limited
End-of-life care in the United States is often fraught with difficult decisions and borne with great expense. Americans are often uncomfortable discussing death and
Involvement of the family is a big part of the collaboration and also with patient-centered care. Family at that moment may have in site information that the patient isn’t sharing
In 1998, the most common cause of child and adolescents death claimed approximately 2500 young lives in the United States alone. The cause of this dreadful loss of life was due to childhood cancers. This paper explores the changes in the life of children dealing with cancer, families that have been affected by these diseases (also known as pediatric cancer) and a small part of the journey they experience. Cancer does not discriminate and affects all members of the family unit. This paper investigates the challenges that a family will experience from the first diagnoses through palliative care. It examines research and statistic about childhood cancer from organization as the American Society of Clinical Oncology (ASCO), the National Cancer Institute's (NCI), Children’s Cancer Research Fund (CCRF), and other cancer research organization. Although there are 12 major types of cancers that affect children, the main focus in this paper will be acute lymphocytic leukemia (ALL). It will also include an interview, the personal experiences of a family, real life emotions, and the effect on the parents and sibling of the (Ashtyn) child presently facing acute lymphocytic leukemia (ALL). Life is no longer what formerly was known as being normal. Life with cancer becomes a new journey, the new normal family life that, unfortunately is not normal, but a life that includes cancer.
Tulsky, J. A. (2005). Interventions to Enhance Communication among Patients, Providers, and Families. JOURNAL OF PALLIATIVE MEDICINE (8), 1. S95 - S102.
The type of research study, sample size, variables, intervention, measurement method, findings, and conclusion are all mentioned in the abstract. Statement of the Problem The problem explored in the article was stated as a problem statement. In this article, the authors explain the stressful situations of families having loved ones die in the intensive care unit. They also state that this problem is very important because there is poor communication between staff, physicians, and surrogates in the plan of care for end-of-life measures (Lautrette et al., 2007).
Papadatou, D., & Bellali, T. (2002). Greek nurse and physician grief as a result of caring for children dying of cancer. Pediatric Nursing, 28(4), 345-53, 363-4. doi: 2003016885
"Coping Interventions for Parents of Children Newly Diagnosed with Cancer: An Evidence Review with Implications for Clinical Practice and Future Research.(Report)." - Pediatric Nursing. N.p., n.d. Web. 11 Mar. 2014.
Death is a personal experience and to ensure loved one’s wishes, there has to be the ‘what if’ conversation. It is natural to talk about the possible end with loved ones after marriage and having children. Living wills are obtained and do not resuscitate orders, thoughts of a possible guardian for the children, life insurance, appointing a health care agent, and any other loose ends that will ensure the well being of the family. A health care agent is someone who the patient designates to make medical decisions, if decisions cannot be made generally. The chosen agent should be a person who knows the wishes on the extent of medical care treatment wanted. The appointed health care agent should be someone who is not afraid to ask questions of the healthcare professionals to get information needed to make decisions and be assertive to ensure that wishes are respected. (Healthcare Agents, n.d.).
Parents go through a wave of emotions when losing a child. They are not only in disbelief and denial, but also feel angry and guilty. Some parents find themselves wanting to talk about it, while others find it easier to talk about the death of friends or other family members rather than their child’s. When a child dies this disrupts the parent’s health and well-being during the hardest phase of bereavement and for long periods over the course of their lives (Hong, Floyd & Seltzer, 2010).