Palliative Care For Adolescents Research Articles

Palliative Care in Adolescents and Young Adults With Cancer.

Palliative care (PC) aims to improve quality of life (QOL) for patients with serious illness and their families by recognizing and alleviating the physical, emotional, social, existential, and spiritual suffering of patients and their communities. Because adolescents and young adults (AYAs, age 15-39 years) with cancer commonly report distress across all these domains and because that distress translates to their QOL during and after their cancers, PC is particularly relevant for this population. Here, we review the evidence for PC among AYAs with cancer, including its rationale, gaps, opportunities, and implications for care delivery. For example, nearly 90% of AYAs with cancer report distressing symptoms during their treatment, those who survive report ongoing unmet psychosocial and physical health needs, and those who die from their cancers are highly likely to receive medically intense care that is discordant with their goals and values. AYA communication and decision making can be challenging because of ethical and developmental considerations regarding the patient's autonomy and competing priorities of patients and caregivers. PC interventions (including primary PC delivered by oncologists, routine PC subspecialty care, symptom tracking, advance care planning, and psychosocial programs promoting AYA resilience) are all associated with improved patient-centered outcomes. However, PC is inconsistently integrated into AYA oncology care, and access to PC programs is not equitable; marginalized groups continue to experience poorer outcomes. Ongoing and future research and clinical initiatives must continue to bridge these gaps. Improving the QOL of AYAs with cancer is a shared goal of the larger clinical oncology community, and including PC in AYA cancer care delivery can help attain that goal.

Palliative Care in Adolescents and Young Adults With Cancer-Why Do Adolescents Need Special Attention?

Meeting shortfalls in the provision of care to adolescents and young adults with cancer has focused largely on improving outcomes and psychosocial support. A significant percentage of adolescents and young adults with cancer will die of disease because of initial poor prognosis conditions or disease relapse. In adults, progress has been made in the concept of an integrated cancer/palliative care service. In pediatric oncology, the application of this philosophy of care has lagged behind somewhat. In the case of adolescents, particularly those with advanced cancer, the palliative care needs, in a broader sense than only end-of-life care, are often not adequately met, irrespective of whether treatment is delivered in a pediatric or adult cancer service. There are a number of age-specific aspects to palliative and supportive care for adolescents. Complex interactions between clinicians, parents, and patients potentially limit the young person's ability to influence care planning. The wide variation in real or perceived competency at this age, the developmental challenges in relation to behavior, communication, and coping strategy all require particular professional expertise that is not always available.

Children's palliative care now! Highlights from the second ICPCN conference on children's palliative care, 18-21 May 2016, Buenos Aires, Argentina.

The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’ emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children’s palliative care, and hidden aspects of children’s palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children’s palliative care, genetics, perinatal and neonatal palliative care, the impact of children’s palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children’s palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The ‘Big Debate’ explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children’s palliative care and participants were continually challenged to ensure that children can access palliative care NOW.

Palliative Care in Adolescents and Young Adults With Cancer.

Cancer survival rates for adolescents and young adults (AYA) have not improved over time relative to children or adults older than 39 years of age. Palliative care is specialized medical care focused on the control of symptoms and relief of suffering with the goal of improving quality of life for the patient and his or her family. To date, the integration of palliative care in AYA patients with cancer remains suboptimal. We explore the role of palliative care in the continuum of clinical care for AYA patients with cancer. Clinical practice guidelines highlight the need for integrating palliative care for all patients with cancer, including the AYA population. Despite this, a paucity of evidence exists regarding the use of palliative care with AYA patients with cancer. Graduate clinical education represents an opportunity to promote the full inclusion and early integration of palliative care in the care of AYA patients with cancer. Advance care planning is one area where some agreement exists on the unique needs of AYA patients and their families. In general, palliative care is seen as being synonymous with end-of-life care for patients with cancer. However, the emerging trend toward standardizing oncology care to meet the unique medical, psychosocial, and supportive care needs of AYA patients with cancer and their families represents an opportunity for health care professionals to collaborate early with palliative care specialists to control symptoms and relieve suffering in this vulnerable population.

Adolescent Palliative Care: Who Decides? (SA503)

Adolescent Palliative Care: Who Decides? (SA503)

Palliative care for adolescents and young adults with cancer.

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities.

Palliative care in adolescents and young adults with cancer

Adolescents and young adults (AYA) with advanced or terminal cancer have distinctive medical and psychosocial needs that may not have been adequately provided by either pediatric or adult palliative care services. A discussion group, as part of a larger workshop on AYA with cancer, was held in Toronto on March 11-13, 2010;117:-. Recommendations were as follows: Develop a specific AYA screening tool designed to detect increased anxiety or new symptoms and to initiate discussion about palliative or symptom care; Set Canadian standards for palliative care in AYA patients. These standards should be included in hospital accreditation; Involve the palliative/symptom care team early in the disease trajectory to help manage clinically important symptoms that may not be associated with imminent death; Establish specific AYA multidisciplinary palliative care teams throughout Canada that are flexible and can work in both pediatric and adult facilities, and are able to work in a "virtual" environment to support patients being cared for at home; Improve physical facilities in hospices and hospitals to meet the distinctive needs of terminally ill AYA patients; Enhance support for palliative care at home by: changing legislation to improve Compassionate Care Benefits and developing "virtual palliative care support teams". Adequate provision of AYA palliative care and symptom management services will likely confer notable benefits to AYA patients and their families, and is likely to be cost saving to the tax payer by avoiding prolonged hospitalization and promoting easier return to work for the families and caregivers.

Palliative Care for Adolescents and Young Adults: A Pediatric Perspective.

Palliative Care for Adolescents and Young Adults: A Pediatric Perspective.

In Palliative Care for Adolescents (738)

in Palliative Care for Adolescents (738)

Palliative Care for Adolescents: Issues and Challenges (522)

Palliative Care for Adolescents: Issues and Challenges (522)

Palliative care in adolescents

Specialist Palliative Care's involvement in adolescent cancer is relatively new. The challenges are not so much to do with the technicalities of symptom control, but in walking the fine line with patients and families as they wrestle with transitions into an adulthood that will not happen and attempts to pack a lost future into a few months or years whilst coping with arduous and often futile treatments that attempt to buy some more time. The article explores some underlying principles and the model of care that has emerged at this specialist centre for adolescent care.

Palliative care: moving forward

Children with life-limiting conditions cannot yet expect the same access to specialist palliative care services that is available to adults. On the other hand, the paediatric approach to the care of patients already embodies much of what specialist palliative medicine can offer. Paediatric palliative care must, of course, develop from within paediatrics if we are to meet the needs of children. At the same time, we have much to learn from our colleagues in adult medicine, both corporately and individually. Adolescent palliative care, in particular, is an opportunity for collaboration. Specialist palliative care in children needs to be delivered in many different clinical locations. To achieve this, the consultant must take on an advisory and co-ordinating role as well as giving specialist advice. The exact role of the consultant in paediatric palliative care will depend more on the individual child than on the model. This article considers where we have reached, and where we are going in the development of this new subspecialty.