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The importance of palliative care
Literature review palliative care
The importance of palliative care
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The Importance of Medical Staff Education in Pediatric Palliative Care
Krista E. Livingston
Durham Technical Community College
Abstract
P- Pediatric patients/parents in need of end-of-life care/support
I- patients/parents receive support and palliative care by formally trained medical staff
C- Patients/parents who receive palliative care by medical staff with no formal training
O- Pediatric patients/parents have a more satisfying experience during end-of-life care when given by formally trained medical staff.
The Importance of Medical Staff Education in Pediatric Palliative Care
Introduction
The impending death of a child is almost inconceivable for a parent. A non-sequential string of events that rocks a family to the core. While experiencing these devastating life events, the child and their family will be taken care of by a health care team. Pediatric palliative care is aimed to improve the quality of life and reduce stress for the patient and their family. While any member of the patients treatment team may participate in this care, it may not be the best practice for the patient, family, or medical staff. When the medical team has not been formally educated on how to manage care for a dying child, conflicts may arise. With specialized training, the medical team could vastly improve the end-of-life experience for the patients and their families.
Background of the Problem
According to Beckstrand, Rawle, Callister, & Mandleco (2010) “Death of a child evokes deep feelings of tragedy, devastation, and painful confusion at the injustice of a life being ended prematurely.” (p. 544) These are the raw emotions that are prevalent when a child is dying. For the child and the family, these final fleeting m...
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...states “There is a need for health professionals to better understand the concept of palliative care, factors that contribute to honest, open authentic and therapeutic relationships of those concerned in the care of the dying child” (p.59). The care provided to a child and family at the end-of-life can have a lasting effect on the way they grieve. When the medical team has received the specialized training for palliative care of a child, it helps lessen many of the barriers that lie between the family and the health care team. The medical team plays a vital role in the families perception of the care their child is receiving. When the death of a child is approached in a multi-disciplinary way,where everyone on the medical team works in sync, It provides an optimal environment that could improve the end-of-life experience for dying children. (Beckstrand et al., 2010)
This allows the nurse to assess the patient’s pain and suffering related to the treatment plan in place (Settle, 2014). The ability to communicate well is essential for ethical decision making in the NICU (Monterosso et al., 2005). Nurses play a big role in supporting the parents while their child is in the NICU. Showing compassion and demonstrating caring actions when caring for the patient makes it more likely that the parents will trust the nurse and the information the nurse gives them regarding their child’s condition. This trust is important as it helps the parents feel confident in the decisions they are making about their child’s care. When the parents of an ill child in the NICU have decided to terminate treatment palliative care by the nurse and other healthcare providers comes into play. Palliative care is keeping the child comfortable by treating the symptoms and being there for the parents and child physically, emotionally, and spiritually (Eden & Callister, 2010). The patient and family should be placed in a private room that is dimly lit and has minimal noise. There should be enough room to accommodate other family members as well. All unnecessary medical equipment such as ventilators and monitors should be removed from the patient. IV access should remain in place to give adequate medication for pain. Supplemental
Final Gifts, written by hospice care workers, Maggie Callanan and Patricia Kelly, includes various stories detailing each of their life changing experiences that they encountered with their patients. Hospice care allows the patient to feel comfortable in their final days or months before they move on to their next life. This book contains the information considered necessary to understand and deal with the awareness, needs, and interactions of those who are dying. Not only are there stories told throughout the book, there are also tips for one to help cope with knowing someone is dying and how to make their death a peaceful experience for everyone involved. It is important that everyone involved is at as much peace as the person dying in the
Palliative care is medical or comfort care that reduces the severity of a disease or slows its progress, but does not provide a cure (Dreeben, 2007). Different people have different needs when life is ending. Working with the incurable may sound depressing but death is a certainty and what we do each day for these patients as physical therapist assistants, matters. Providing care effectively and appropriately has a huge impact on the patient, therefore acquiring the ability to comfort and care for a patient at such a critical stage in life, is an amazin...
The nurse becomes the confidant, the guide through the darkness, a source of comfort for those experiencing the trauma of losing a child. To successfully fulfill these nursing roles, in addition to roles that must be fulfilled to meet other patient’s needs, one must acknowledge their own definition of death and educate themselves on cultural and societal norms associated with death and dying. It is important to identify one’s own definition of death and dying but also understand that one’s preference does not define the death experience for others. The individuality and uniqueness of each death experience means that one definition of death may be hard for one to accomplish. It is important to maintain an open mind, nonjudgmental spirit, and impartiality for the cultures and practices of others surrounding death and dying. A culturally competent nurse is not only responsible for acknowledging the cultural norms of others but also respecting and educating themselves about the death rituals of their patient’s culture and providing the family with as many resources to safely and effectively fulfill their cultural practices. Education is empowering for the nurse who is navigating the death and dying process. Education often supplements ones credibility with the dying patient and their family which can ease overall anxiety and further promote ones role as a patient advocate and provider of
In this book, the reader gets a closer look into what the end of care looks like from a medical perspective. The author provides a variety of different stories about patients that he worked with. The author also talks about his father throughout the book and his end of life journey. He goes from story to story as he always connects back to his personal connection with the end of life process he experienced with his father. Even as a medical doctor, things were still challenging. Each story is a little bit different and unique. There are some about older people who have lived long lives and then their bodies start to fail and some stories about younger people who have are diagnosed with cancer or other terminal illnesses. Altogether, this book
Patient and family centered care involves, not only the patient, but also their families, in order to promote health. The article, Factors Associated with Experiences and Attitudes of Healthcare Professionals Towards Family-Witnessed Resuscitation: A Cross-Sectional Study (2015), involves a study to identify what influences on healthcare professionals are linked to negative attitudes towards family-witnessed resuscitation (FWR) (Sak-Dankosky, Andruszkiewiez, Sherwood & Kvist, 2015).
Communicating with the patient’s family or caregiver can assist the case manager in developing methods to help reduce stress, anxiety, depression, and fears associated with end-of-life planning (National Institute of Nursing Research, 2011). The case manager will implement in the plan of care, access to any treatment that will improve the patient’s quality of life. Evidence-based practice can be incorporated in the patient’s plan to enhance outcomes. In order to offer various treatment preferences as their condition changes, the case manager must be knowledgeable about the patient’s condition and the potential complications that can occur during the patient’s life expectancy. Communication is vital, keeping constant communication with the patient and family during this difficult time in their lives helps improve quality of care and satisfaction with the care they receive (Meyer,
The American Nurses Association Code of Nursing Ethics (ANA) provides documentation in a position statement stating what the nurses’ role and responsibility when counseling at the end of life. The ANA’s position is stated clearly. End-of-life choices are a quality of life issue. Nurses, individually and collectively, have an obligation to provide comprehensive and compassionate end-of-life care, including the promotion of comfort, relief of pain, and support for patients, families, and their surrogates when a decision has been made to forgo life-sustaining treatment (American Nurses Association Code
Parents different beliefs and and cultural backgrounds may influence their perceptions regarding the benefits of palliative care. The team needs to put all these differences together and make them into a united treatment plan that had the child’s best interest. In this situation the whole team consulted with the parents and were able to resolve difficult problems that arose by the child’s life and death, including the mothers fear that if she did not pursue every last medical medical treatment and held on to every last hope, she would not be fulling her role as a parent and gave up on her child. The team was able to reassure and comfort her that palliative care was in the childs best interest. The child was able to go home two days later and was discharged with hospice care. He died peacefully surrounded by his
This essay will provide a detailed analysis and critique of the role of a Paramedic and the impact that they may have when dealing with palliative care patients who are at the end of their life and the patients significant others. The purpose of this essay is to analyse and explore the current theories and guidelines surrounding end of life care and how these can relate to Paramedic practice. It is also a Health and care Professions Council (HCPC) requirement that Paramedics are aware of varying cultures, equality and diversity and how this can impact upon their practice (Health and Care Professions Council 2014), the HCPC also states that Paramedics must ensure that they promote and protect the interests of their patients’ (Health and Care
Some of the current issues surrounding paediatric palliative care is that health care providers, mainly nurses are feeling the burnout and frustrations of caring for a dying child. Many nurses have claimed to have moral and ethical distress which in turn, can lead to feelings of helplessness and anger (Morgan, 2009, p. 88). Health care providers may also feel personal pain during the care of a dying child (Morgan, 2009, p. 88). Many health care providers and families feel like there is a lack of communication about the disease and treatments the child is receiving, as well as the patients often feel like they do not have a voice about treatments (Hsiao, Evan & Zeltzer, 2007, p.361). The lack of education and knowledge about paediatric palliative care leads to society treating the subject of paediatric palliative as taboo and forbidden to talk about because no one wants to admit that children unfortunately die (Morgan, 2009, p. 87).
Children find it hard to make sense of reality, organizing the chaos and reconstructing normal. They see death and grief like the loss of meaning that is dependent on a relationship. As the child and adolescents grief, they seem to be constructing new reality and normality. As the teenagers and children grow, they are always in the business of establishing and making meaning to their life. This is their basic life and death, and loss of the loved ones disrupts this development. As they work to create their sense of self, at the same time existing as dependents, thus the loss, due to death is often devastating to them and their development in general.
The end-of-life nurse’s primary objective is to provide comfort and compassion to patients and their families during an extremely difficult time. They must satisfy all “physical, psychological, social, cultural and spiritual needs” of the patient and their family. (Wu & Volker, 2012) The nurse involves their patient in care planning, as well as educating them about the options available. They must follow the wishes of the patient and their family, as provided in the patient’s advance directive if there is one available. It is i...
Palliative care encompasses advanced care planning, legal issues, and ethical decisions which help ensure that the patient maintains their autonomy (Buttaro, Trybulski, Bailey & Sandberg-Cook, 2016). The problem of advanced planning should be discussed with every adult patient with the first exam and then yearly. (Buttaro et al., 2016). Knowing what the patient’s wishes are and having affairs in order is important for every family to have a plan for when the time comes. The Terri Schiavo court battle that brought patients’ rights for an end of life, palliative care and persistent vegetative states and how life and death are determined (Caplan, 2015). There is no standard to how the end of life decisions is made and living wills, and advance directives are not common place for everyone (Caplan, 2015). Palliative care can offer the patient and their family an improved experience in end of life care with patient-centered care (Buttaro et al., 2016). The beginning is understanding what the patient's wishes, which is best achieved with the patient before any disease processes make the patient unable to participate (Buttaro et al., 2016) are.
It is vital for the advanced practice nurses to develop, document, educate, and implement quality care for the pediatric palliative patient and family, as “many parents need education and support in what is best, a role that is usually filled by health care professionals” (Whitty-Rogers, p. 744). Pediatric palliative patients and parents are active participants in care deserving of respect. “Respecting beliefs, customs, and traditions with a focus on preserving the integrity and sanctity of the parent-child relationship is of utmost importance in pediatric palliative care” (Weiner, p.