Terminal Phase Of Illness Research Articles

Principles and Practice of Palliative Care

The trajectories of serious illness and dying have changed in the last century; in the past, patients lived shorter lives and often died quickly of infectious disease, whereas patients in the 21st century live longer and often with prolonged debility in the advanced stages of illness. As a result, patients with serious illness can suffer undertreated symptoms and often feel poorly prepared for the final stages of disease. With more options for advanced life support and other aggressive interventions at the end of life, patients and families face increasingly complex medical decisions in the terminal phase of illness, and the treatments they receive do not always align with their goals and values. Emerging evidence suggests that integrating palliative care into the treatment of advanced illness can improve outcomes, decrease costs, and improve both patient and family satisfaction. Consequently, patient access to high-quality specialty-level palliative care is becoming standard of care at most academic cancer centers and more available in the community. This chapter describes the practice and principles of specialty-level palliative care and outlines specific "generalist" palliative care competencies essential for all physicians caring for patients with serious illness, including prognostication, patient-centered communication, and the navigation of ethical dilemmas in the field of palliative care. Tables outline the philosophy of palliative care, domains of suffering, location of death of hospice patients, the palliative performance scale, median survival times for cancer syndromes, indicators associated with a poorer prognosis in congestive heart failure, the NURSE mnemonic for accepting and responding to emotion, palliative care communication competencies in the intensive care unit, and the SPIKES mnemonic for breaking bad news. Figures depict causes of death in 1900 versus 2010, palliative care through the trajectory of serious illness, theoretical trajectories of disease, life expectancies for women and men, mortality at 1 year post discharge, and a model for patient-centered communication. This chapter contains 6 highly rendered figures, 9 tables, 169 references, 1 teaching slide set, and 5 MCQs.

Principles and Practice of Palliative Care

The trajectories of serious illness and dying have changed in the last century; in the past, patients lived shorter lives and often died quickly of infectious disease, whereas patients in the 21st century live longer and often with prolonged debility in the advanced stages of illness. As a result, patients with serious illness can suffer undertreated symptoms and often feel poorly prepared for the final stages of disease. With more options for advanced life support and other aggressive interventions at the end of life, patients and families face increasingly complex medical decisions in the terminal phase of illness, and the treatments they receive do not always align with their goals and values. Emerging evidence suggests that integrating palliative care into the treatment of advanced illness can improve outcomes, decrease costs, and improve both patient and family satisfaction. Consequently, patient access to high-quality specialty-level palliative care is becoming standard of care at most academic cancer centers and more available in the community. This chapter describes the practice and principles of specialty-level palliative care and outlines specific "generalist" palliative care competencies essential for all physicians caring for patients with serious illness, including prognostication, patient-centered communication, and the navigation of ethical dilemmas in the field of palliative care. Tables outline the philosophy of palliative care, domains of suffering, location of death of hospice patients, the palliative performance scale, median survival times for cancer syndromes, indicators associated with a poorer prognosis in congestive heart failure, the NURSE mnemonic for accepting and responding to emotion, palliative care communication competencies in the intensive care unit, and the SPIKES mnemonic for breaking bad news. Figures depict causes of death in 1900 versus 2010, palliative care through the trajectory of serious illness, theoretical trajectories of disease, life expectancies for women and men, mortality at 1 year post discharge, and a model for patient-centered communication. This review contains 6 highly rendered figures, 9 tables, and 169 references.

The difference between general care planning and advance care planning

Social and health care requires planning. Holistic patient assessment enables individual needs to be identified before the provision of appropriate care. Often care provision requires a multidisciplinary, coordinated response. Holistic assessment helps this process, allowing individuals and families to consider all aspects of care and plan for the future. Assessment should be centred around people’s concerns and be flexible enough to respond to new circumstances. Assessment during end-of-life care should be a continual process. The nature of the dying phase of terminal illness will vary from individual to individual and according to diagnosis. Assessment should, therefore, be repeated whenever the individual or a professional considers it necessary. Offering terminally ill patients the opportunity to conduct advance care planning enables decisions to be made about future treatment, which reflect individual patient preferences. This process is particularly important to protect individuals in the event that they lose the mental capacity to make decisions regarding their care. To mark the ‘Dying Matters Week’ in March 2010, the National End of Life Care Programme published a chart describing the differences between general care planning and advance care planning. Amongst the factors considered in the chart is the legal status of each type of decision or care planning. This chart is available in a table format and can be downloaded from the National End of Life Care Programme website (see web address below). Individuals involved in a person’s care must understand the difference between general care planning and advance care planning (ACP). Robust assessment processes must be used to ensure ACP information is up to date and that patients’ wishes are shared between different professional groups — although patient consent to such sharing is required. ### General care planning The activity of general care planning may be undertaken in any …

What is the preferred place of care at the end of life for HIV/AIDS patients in countries affected by civil war and genocide: the case of Rwanda?

The main aim of palliative care is to improve the quality of life of people facing threatening diseases by allowing them a dignified death. Therefore, it is crucial to take into account the user's preference of where to be taken care of during the terminal phase of illness. Palliative care in Rwanda is at an early phase of development; therefore, effective planning and implementation that considers the user's view on where to be taken care of is important. This study investigated where HIV/AIDS patients wanted to be cared for in the terminal phase of illness. The results form part of a larger study on met and unmet palliative care needs of people living with HIV/AIDS in selected areas in Rwanda.

A New Data-Based Motor Subtype Schema for Delirium

A New Data-Based Motor Subtype Schema for Delirium

Alteraciones de la morfología dendrítica neuronal en la corteza cerebral de ratones infectados con rabia: un estudio con la técnica de Golgi

The neurological signs of rabies are very dramatic. Nevertheless, the infected brain manifests only very subtle histological changes. The neuronal morphology in the cerebral cortex of rabies-infected mice was examined by means the Golgi technique for detection of neuropathy. Two groups of mice were inoculated with rabies-one with street virus isolated from an infected dog and the second with fixed CVS (challenge virus standard) virus. At the terminal phase of illness, the animals were sacrificed and fixed for histological staining by perfusion with paraformaldehyde. Next, the brains were treated by the Golgi technique and coronal sections were obtained. Neurons enclosed within 1 mm2 frames of the frontal cortex sections were counted and the sizes of the cellular bodies were measured. Photographs of several depth levels from the sections were obtained. Cortical pyramidal neurons showed distinctive morphological alterations in the soma and dendrites (including loss of dendritic spines) in 12.9% of cells from intracerebral infected-mice with street virus; in 8.2% of neurons from intramuscular infected-mice with street virus, and in 31.8% of neurons from mice injected intramusculary with fixed virus. In addition, the number of neurons impregnated by the Golgi technique in infected brains was considerably lower than in the non-infected samples. Rabies virus can induce structural neuron damage. The infection also appears to induce tissue changes that interfere with the chemical mechanisms of the Golgi silver impregnation method.

Care of continence during the terminal phase of illness

This article will explore the issue of continence care during the terminal phase of life. This period is often referred to as ‘the end of life’ or ‘the last 48 hours’. Patients are thought to be in the dying phase of their illness when they only have hours or days left to live (referred to as the ‘terminal phase’ in this article). Continence care is complex during the terminal phase as it can have a significant impact on the dignity of patients and adds to their physical and emotional burden. The care given is both intimate and embarrassing, often involving invasive procedures, at a time when patients may be unable to make choices. Therefore, discussion of possible continence problems should be broached sensitively with patients when they are still able to make decisions on their preference for continence care. However, continence problems during the terminal phase are unpredictable, leaving healthcare professionals unprepared on how to best treat the symptoms of urinary and bowel problems. This article explores the available interventions and their appropriateness to the terminal phase. Conflicts of interest: none

Doppel Induces Degeneration of Cerebellar Purkinje Cells Independently of Bax

Doppel (Dpl) is a prion protein paralog that causes neurodegeneration when expressed ectopically in the brain. To investigate the cellular mechanism underlying this effect, we analyzed Dpl-expressing transgenic mice in which the gene for the proapoptotic protein Bax had been deleted. We found that Bax deletion does not alter either clinical symptoms or Purkinje cell degeneration in Dpl transgenic mice. In addition, we observed that degenerating Purkinje cells in these animals do not display DNA fragmentation or caspase-3 activation. Our results suggest that non-Bax-dependent pathways mediate the toxic effects of Dpl in Purkinje cells, highlighting a possible role for nonapoptotic mechanisms in the death of these neurons.

‘Do not attempt resuscitation’ orders in the peri‐operative period

‘Do not attempt resuscitation’ orders in the peri‐operative period

The use of syringe drivers: a paediatric perspective.

Successful symptom management in the palliative and terminal care of patients frequently involves the use of syringe drivers. A wealth of literature exists to support their use in the care of adult patients both within specialist palliative care inpatient units and in the community setting. However, little has been written regarding their use in the paediatric population. The purpose of this article is to examine specific issues concerning the use of syringe drivers when caring for children and young people in the terminal phase of illness.

Dame Cicely Saunders has demonstrated nursing's value.

Every year at the BJN's Clinical Practice Awards I have the honour of presenting the BJN Lifetime Achievement Award. Previous winners have been Doreen Norton and Nancy Roper. This year the recipient was the leader of the modern palliative care movement, Dame Cicely Saunders. The founder of St Christopher's Hospice, the first research and teaching facility for the care of people with incurable disease, Dame Cicely has dedicated her life to alleviating the physical, psychological, social and spiritual suffering of people in the terminal phases of illness.

Adult Siblings' Perceptions of Family Life and Loss: A Pilot Case Study

The death of a child with a disability presents unique challenges for individual family members. Whereas parents have received much attention in terms of their needs and challenges, siblings have received less attention. Growing up with a child with a disability who subsequently dies has a profound impact. This paper used in-depth interviews to illuminate the experiences and perceptions of siblings in one family in which a child with cerebral palsy died. The 5 siblings were interviewed about their experiences of family life and their methods of coping during the terminal phases of illness and after their sister's death. Their views on friendships, growing up, vocational choices, their sister's contribution to their lives, and their adjustment to her death are illustrated. Implications for health professionals working with siblings and families are drawn in terms of adult siblings' coping responses and their need for mutual support.

About the continuity of our consciousness.

Some people who have survived a life-threatening crisis report an extraordinary experience. Near-death experiences (NDE) occur with increasing frequency because of improved survival rates resulting from modern techniques of resuscitation. The content of NDE and the effects on patients seem similar worldwide, across all cultures and times. The subjective nature and absence of a frame of reference for this experience lead to individual, cultural, and religious factors determining the vocabulary used to describe and interpret the experience. NDE can be defined as the reported memory of the whole of impressions during a special state of consciousness, including a number of special elements such as out-of-body experience, pleasant feelings, seeing a tunnel, a light, deceased relatives, or a life review. Many circumstances are described during which NDE are reported, such as cardiac arrest (clinical death), shock after loss of blood, traumatic brain injury or intra-cerebral haemorrhage, near-drowning or asphyxia, but also in serious diseases not immediately life-threatening. Similar experiences to near-death ones can occur during the terminal phase of illness, and are called deathbed visions. Furthermore, identical experiences, so-called “fear-death” experiences, are mainly reported after situations in which death seemed unavoidable like serious traffic or mountaineering accidents. The NDE is transformational, causing profound changes of life-insight and loss of the fear of death. An NDE seems to be a relatively regularly occurring, and to many physicians an inexplicable phenomenon and hence an ignored result of survival in a critical medical situation.

A profile of dying residents in South Australian nursing homes

In Australia there is increasing interest in palliative care for nursing home residents who experience a period of increased care need in the months, weeks or days before death (Maddocks et al, 1996). The term ‘palliative care’ has been used interchangeably with ‘hospice care’ and ‘terminal care’ in Australia. In this article, however, palliative care refers to a holistic philosophy of care relating to the care needs of those in the terminal phase of illness. This article focuses on residents identified as dying and requiring palliative care in 10 South Australian nursing homes.

Palliative Care Services in the Community: What Do Family Doctors Want?

The views of family doctors on local specialist palliative care services such as hospices and home care teams and the needs of their patients were studied. Of 203 family doctors sent a questionnaire, 102 (50%) responded. Attempts were made to follow up a random sample of 42 non-responders by telephone interview. During the previous two years family doctors had referred a mean of 5.5 patients to inpatient specialist palliative care services. A further 4.7 patients had been referred to specialist palliative home care teams. During the same two years family doctors had cared for a mean of 2 patients during the terminal phase of illness without input from specialist palliative care services. Although many reports about the services were favorable, family doctors wished for improved communication and liaison from palliative care services, input for patients who did not have cancer, and improved out-of-hours access. The telephone survey of non-responders suggested that these doctors had lower levels of awareness of palliative care problems and services. The findings support the move by specialist palliative care services to extend their remit beyond cancer and to provide 24-hour care. They also signal a need for caution if primary care is to determine the development of palliative care.

Psychiatric Symptom Management in Terminal Care

During the terminal phase of illness, many geriatric patients develop psychiatric complications that subsequently have profound effects on their quality of life. Effective treatment requires the skills of a physician who is experienced in the recognition, assessment, and management of psychiatric complications of terminal care. Specialized knowledge is required, because even the most common psychiatric symptoms (anxiety, depression, and cognitive disorder) may be difficult to diagnose and treat. Recognition and management are complicated by the fact that these symptoms can arise as a consequence of other symptoms, for example, as a direct result of the disease and its treatment, or as a reflection of underlying psychosocial issues. In many instances, the use of pharmacologic agents, either alone or in combination with psychotherapeutic interventions, provides reasonable control of psychiatric symptoms. Here, too, specialized knowledge is required in order to know which regimens are likely to yield the most benefits with the least risk of toxicity. Fortunately, a considerable body of knowledge has accumulated over the last few years regarding the management of psychiatric symptoms in terminal care. The challenge for the future is to make sure that this information is applied in the routine clinical care of the terminally ill geriatric patient.

Ethical dilemmas in hospice and palliative care.

In order to understand some of the ethical dilemmas that face hospice programs in the United States, one must understand the Medicare Hospice Benefit, which is the model by which hospice programs provide palliative care to terminally ill patients in the United States. Unlike palliative care programs outside the United States, patients must have a prognosis of 6 months or less to receive hospice care under the Medicare Hospice Benefit. Care is reimbursed on a per diem basis, and inpatient care is restricted to pain and symptom management that cannot be managed in another setting. Ethical dilemmas that face physicians referring patients to hospice programs include the ability of clinicians to predict accurately a patient prognosis of 6 months or less, and to what extent hospice programs and clinicians are obligated to provide patients with full information about their illness, as the Medicare Hospice Benefit requires that patients sign an informed consent in order to elect the hospice benefit. There are ethical dilemmas that affect day-to-day patient management in palliative care programs including physician concern over the use of morphine because of possible respiratory depression in the advanced cancer patient, the question of providing enteral or parenteral nutritional support to patients who refuse to eat near the end of life, and the question of providing parenteral fluids to patients who are unable to take fluids during the terminal phases of illness. A final ethical dilemma concerns the methodology for quality of life research in palliative care. By following current research dogma, and only considering patient-generated data as valid, the patient population that most needs to be studied is excluded. A new methodology specifically for palliative care research is needed to provide information on the patients who are cognitively or physically impaired and unable to provide input regarding their needs near the end of life.

Phototherapy in the treatment of depression in the terminally ill

Research in affective disorders has shown that there is a clear link between mood and light exposure, and that exposure to bright wide-spectrum light (phototherapy) may be an effective antidepressant treatment in some clinical situations. Cancer patients, especially those in the terminal phase of illness, have a high incidence of depression. Furthermore, their mobility is often severely reduced, resulting in little exposure to direct sunlight. We report the use of phototherapy in three terminally ill patients to alleviate symptoms of depression.

Teicoplanin in home therapy of the terminally ill child.

Children discharged in the terminal phase of illness were offered the possibility of having central venous line infections treated with teicoplanin at home by their parents after suitable instruction. The decision to begin antibiotic treatment was subjective, based on a history of rigors and/or raised temperature in an otherwise "well" child. No difficulties were encountered in instructing the chosen parents. In all, five treatment periods of 7 days were required in the five children selected. The review time was 31 weeks (mean duration, 6.2 weeks/patient; range, 4-12 weeks), ended in all cases by death. Infection occurred a mean of 3.2 weeks after discharge (range, 1-8 weeks), and all episodes were successfully treated at home without hospital admission or ward-based support. No deaths occurred as a result of antibiotic therapy failure, and there were no clinically relevant side-effects. Autopsy confirmed the absence of central venous line infection in one patient, but blood culture was positive for Staphylococcus aureus in another. This study shows that home treatment of line infections with teicoplanin is effective and well tolerated, and offers advantages in terms of quality of life and parent-child relationships.

Counselor of quality.

Coping with cancer from the patient's or counselor's viewpoint means that strengths and resources depend on assessing predominant problems and acting appropriately to alleviate them. It does not always mean resolution of problems, but it does require understanding where the pressure points are that lead to more distress. Thus, counselors anticipate as well as understand actual distress; visualize various outcomes of different interventions, medical or otherwise; and narrow the gap between what is hoped for and what might be possible. Pastoral counseling needs a viewpoint that maintains morale in the utmost phase of terminal illness. Facing mortality is difficult for the counselor as well as significant others. Therefore, they must deal directly with bereavement and potential loss, if possible, indicating their willingness to confront ultimate questions, even without answers. Overall, the purpose of quality counseling is in the counselor: limitation is not futility. The job of counseling is not to figure out the universe or explain the unexplainable. Rather, the purpose of counseling is to help a suffering individual to come back within the range of normalized behavior and to become acceptable and credible. In this way, out of the web of vulnerability can come further strengths and resources.