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PubMed1998

Teaching care of terminally ill patients: a primary care perspective.

Currently there is a great interest in educating medical students in the care of patients with terminal illness. When medical students do encounter patients with terminal illness, it is often in the acute care setting. We have designed a workshop for fourth-year medical students who are working in general medical, family, or pediatrics practices as part of their month-long primary-care clerkship. The emphasis of this workshop is on the care of the terminally ill patient as a natural extension of the continuum of care offered by a primary-care physician. The workshop involves an interactive interview of a patient with a terminal illness by a group of four to eight students and the guidance of an experienced physician facilitator. Four themes are identified as central to the primary care of patients with terminal illness, and emphasis is placed on communication skills and the meaning of language to the dying patient.

Clinical Clerkship↗

PubMed2000

Salivary flow and its relation with oral symptoms in terminally ill patients.

BACKGROUND: Patients with terminal malignant disease commonly report hyposalivation or xerostomia. This leads to "dry mouth," fungal infection, and mucosal abnormalities. To the authors' knowledge oral symptomatology and findings have not been correlated previously with accurate salivary flow measurements. METHODS: Measurement of stimulated parotid salivary flow rate and clinical recording of oral symptoms within 24 hours from the time of hospital admission were obtained in 48 terminally ill cancer patients. Subjective reporting of symptoms by patients, parotid salivary flow rate, clinical recording of dental status, presence of candidiasis, angular cheilitis, and dryness of the floor of the mouth were obtained. RESULTS: A clinical diagnosis of oral candidiasis was made tentatively in 94% of patients, and 50% of the patients were found to have angular cheilitis. Thirty-one of 45 evaluable patients (68%) reported a sensation of oral dryness. Sixteen of the 48 patients (33%) had no saliva at the floor of the mouth. Analysis of individual salivary flow rates was stratified into 3 levels of secretion: 0, < 0.2, and > or= 0.2 mL/minute. Symptoms were found to correlate with salivary flow rates. CONCLUSIONS: In the current study, symptoms were found to be most severe in the patients with xerostomia followed by those patients with hyposalivation. Treatment should be directed individually to each group of patients using either salivary substitutes or stimulants. The rate of incidence of oral pathologic findings may be higher than formerly recognized.

Aged↗

PubMed2004

Issues in psychotherapy with terminally ill patients.

Psychotherapy with the terminally ill poses special challenges for clinicians and in return offers unique rewards. As a time limited therapy, acceptance, rather than change is a primary goal; yet, patients can be strongly motivated to change. Patients may need to struggle with how to disengage while also maintaining connection. Unique transference and countertransference issues arise. The psychological tasks of dying include grieving, saying goodbye, constructing a meaningful context to one's life, and letting go. The therapist can serve as a companion and guide to the dying person as she or he negotiates these tasks. Through the use of a case example, these issues are explored from the perspectives of patient and therapist. The therapist must address the following issues: attending to physical suffering, differentiating between grieving and depression, addressing fears, facilitating the life review, and assisting in decision making. A dying patient's need to leave a legacy, complete relationships, grapple with spiritual and religious issues, and attend to his or her family, are often important themes. Therapists must work productively with denial, maintain flexible yet appropriate boundaries, grapple with their own anxiety about death, and grieve the loss of their patients. Psychotherapy with dying patients can help reduce their psychological pain, relieving psychosocial distress and providing opportunities for personal growth in the last stage of life. Such work is often draining yet immensely rewarding for the patient and therapist alike.

Aged↗

PubMedDate not supplied

On being terminally ill.

In summary, it would seem that the term terminally ill is used to convey an impression that has been formed by the carers, based on actuarial data for the particular disease from which the patient is suffering, their clinical experience dealing with others similarly affected, and a set of traditionally held beliefs. The consequences of describing someone as terminally ill are legion, affecting all aspects of care and involving the belief systems both rational and primitive of carers and patient alike. As long as we understand that it is an opinion, rather than a statement of fact, then the term terminally ill can serve an important function in communicating information in a readily understood form.

Attitude of Health Personnel↗

PubMed1994

Comfort care for terminally ill patients. The appropriate use of nutrition and hydration.

OBJECTIVE: To determine the frequency of symptoms of hunger and thirst in a group of terminally ill patients and determine whether these symptoms could be palliated without forced feeding, forced hydration, or parenteral alimentation. DESIGN: Prospective evaluation of consecutively admitted terminally ill patients treated in a comfort care unit. SETTING: Ten-bed comfort care unit in a 471-bed long-term care facility. PARTICIPANTS: Mentally aware, competent patients with terminal illnesses monitored from time of admission to time of death while residing in the comfort care unit. MAIN OUTCOME MEASURES: Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients. RESULTS: Of the 32 patients monitored during the 12 months of study, 20 patients (63%) never experienced any hunger, while 11 patients (34%) had symptoms only initially. Similarly, 20 patients (62%) experienced either no thirst or thirst only initially during their terminal illness. In all patients, symptoms of hunger, thirst, and dry mouth could be alleviated, usually with small amounts of food, fluids, and/or by the application of ice chips and lubrication to the lips. Comfort care included use of narcotics for relief of pain or shortness of breath in 94% of patients. CONCLUSIONS: In this series, patients terminally ill with cancer generally did not experience hunger and those who did needed only small amounts of food for alleviation. Complaints of thirst and dry mouth were relieved with mouth care and sips of liquids far less than that needed to prevent dehydration. Food and fluid administration beyond the specific requests of patients may play a minimal role in providing comfort to terminally ill patients.

Aged↗

PubMed2000

Assessing and managing depression in the terminally ill patient. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians - American Society of Internal Medicine.

Psychological distress often causes suffering in terminally ill patients and their families and poses challenges in diagnosis and treatment. Increased attention to diagnosis and treatment of depression can improve the coping mechanisms of patients and families. This paper reviews the clinical characteristics of normal grief and clinical depression and explains strategies for differential diagnosis. Although some literature discusses the psychological issues facing elderly patients and terminally ill patients with cancer, less is known about patients with end-stage pulmonary, cardiac, renal, and neurologic disease. Data on the effectiveness of interventions in terminally ill patients are lacking. Treatment recommendations in this paper represent extrapolations from existing literature and expert opinion. Diagnosing and treating depression in terminally ill patients involve unique challenges. Evidence of hopelessness, helplessness, worthlessness, guilt, and suicidal ideation are better indicators of depression in this context than neurovegetative symptoms. Although terminally ill patients often have suicidal thoughts, they are usually fleeting. Sustained suicidal ideation should prompt a comprehensive evaluation. Clinicians should have a low threshold for treating depression in terminally ill patients. Psychostimulants, because of their rapid onset of action, are useful agents and are generally well tolerated. Selective serotonin reuptake inhibitors and tricyclic antidepressants may also be used. Psychological interventions-including eliciting concerns and conveying the potential for connection, meaning, reconciliation, and closure in the dying process-can also facilitate coping.

Adult↗

PubMed2006

Mind frames towards dying and factors motivating their adoption by terminally ill elders.

OBJECTIVE: This study was designed to advance the understanding of the physical and psychosocial factors that motivate terminally ill elders not only to consider a hastened death but also not to consider such a death. METHODS: I conducted face-to-face in-depth qualitative interviews with 96 terminally ill elders. An inductive approach was taken to locating themes and patterns regarding factors motivating terminally ill elders to consider or not to consider hastening death. RESULT: Six mind frames towards dying emerged: (a) neither ready nor accepting; (b) not ready but accepting; (c) ready and accepting; (d) ready, accepting, and wishing death would come; (e) considering a hastened death but having no specific plan; and (f) considering a hastened death with a specific plan. From the data emerged approaches towards dying and accompanying emotions characterizing each mind frame, as well as factors motivating their adoption by elders. The results showed that psychosocial factors served more often than physical factors as motivators. DISCUSSION: The results demonstrate the importance of assessing the mind frame adopted by a terminally ill elder and his or her level of satisfaction with it. Terminally ill elders may experience a higher quality dying process when a traditional medical care approach is replaced by a holistic approach that addresses physical, spiritual, emotional, and social needs.

Adaptation, Psychological↗

PubMed2000

Referral of terminally ill patients for hospice: frequency and correlates.

BACKGROUND: Despite the central role of hospice in end-of-life care, little is known about the proportion of terminally ill patients referred for hospice and the physician factors associated with hospice referral. METHODS: Cross-sectional data from a self-administered survey of 231 physicians were used to estimate the proportion of terminally ill patients who were referred for hospice and to assess the independent effects of physician factors on hospice referral. RESULTS: On average, physicians reported referring about 55% of their terminally ill patients for hospice; 26.7% of the physicians referred less than one quarter of their terminally ill patients. Physician specialty, board certification, and physicians' knowledge level about hospice were independently associated with the proportions of terminally ill patients referred for hospice. CONCLUSION: Many terminally ill patients are not referred for hospice care and physician factors influence the use of hospice significantly. The study suggests effective factors and groups to target with interventions to enhance the appropriate use of hospice.

Connecticut↗

PubMed1998

The right to information for the terminally ill patient.

OBJECTIVES: To analyse the attitudes of medical personnel towards terminally ill patients and their right to be fully informed. DESIGN: Self-administered questionnaire composed of 56 closed questions. SETTING: Three general hospitals and eleven health centres in Granada (Spain). The sample comprised 168 doctors and 207 nurses. RESULTS: A high percentage of medical personnel (24.1%) do not think that informing the terminally ill would help them face their illness with greater serenity. Eighty-four per cent think the patient's own home is the best place to die: 8.9% of the subjects questioned state that the would not like to be informed of an incurable illness. CONCLUSION: In our opinion any information given should depend on the patient's personality, the stage of the illness and family circumstances. Our study confirms that a hospital is not the ideal environment for attending to the needs of the terminally ill and their families.

Attitude of Health Personnel↗

PubMed1982

Death education and attitudes toward euthanasia and terminal illness.

The attitudes of a random sample of Cleveland clergy toward the experience of terminal illness and the circumstances justifying euthanasia are presented and analyzed. The clergy response patterns revealed that, although eager to prolong life as long as possible, terminally ill patients fear a prolonged period of illness more than death itself. They also agreed that most patients favor the disclosure of terminal illness. The clergy's response to a questionnaire exhibited a definite ranking (i.e., scaling) in the order of priority of the different circumstances justifying passive euthanasia. Using training in death counseling as a control variable produced sharper division in the response categories for each statement. The controversial nature of euthanasia and the problem of ascertaining the psychological needs of the terminally ill became more apparent with the group who had more training in death counseling. Interpretations of the findings are presented, and a need for a careful reexamination of the effects of death education on attitudes toward controversial subjects in death and dying is stressed.

Attitude to Death↗

PubMed2006

Shelter-based palliative care for the homeless terminally ill.

BACKGROUND: The homeless have high rates of mortality, but live in environments not conducive to terminal care. Traditional palliative care hospitals may be reluctant to accept such patients, due to behavior or lifestyle concerns. The Ottawa Inner City Health Project (OICHP) is a pilot study to improve health care delivery to homeless adults. This is a retrospective analysis of a cohort of terminally ill homeless individuals and the effectiveness of shelter-based palliative care. As proof of principle, a cost comparison was performed. METHODS: 28 consecutive homeless terminally ill patients were admitted and died at a shelter-based palliative care hospice. Demographics, diagnoses at admission and course were recorded. Burden of illness was assessed by medical and psychiatric diagnoses, addictions, Karnofsky scale and symptom management. An expert panel was convened to identify alternate care locations. Using standard costing scales, direct versus alternate care costs were compared. RESULTS: 28 patients had a mean age 49 years; average length of stay 120 days. DIAGNOSES: liver disease 43%, HIV/AIDS 25%, malignancy 25% and other 8%. Addiction to drugs or alcohol and mental illness in 82% of patients. Karnofsky performance score mean 40 +/- 16.8. Pain management with continuous opiates in 71%. The majority reunited with family. Compared to alternate care locations, the hospice projected 1.39 million dollars savings for the patients described. CONCLUSION: The homeless terminally ill have a heavy burden of disease including physical illness, psychiatric conditions and addictions. Shelter-based palliative care can provide effective end-of-life care to terminally ill homeless individuals at potentially substantial cost savings.

Adult↗

PubMed1999

Information needs in terminal illness.

Despite evidence that doctor-patient communication affects important patient outcomes, patient expectations are often not met. Communication is especially important in terminal illness, when the appropriate course of action may depend more on patient values than on medical dogma. We sought to describe the issues important to terminally ill patients receiving palliative care and to determine whether patient characteristics influence the needs of these patients. We utilized a multimethod approach, first conducting interviews with 22 terminally ill individuals, then using these data to develop a more structured instrument which was administered to a second population of 56 terminally ill patients. Patient needs and concerns were described and associations between patient characteristics and issues of importance were evaluated. Seven key issues were identified in the initial interviews: change in functional status or activity level; role change; symptoms, especially pain; stress of the illness on family members; loss of control; financial burden and conflict between wanting to know what is going on and fearing bad news. Overall, respondent needs were both disease- and illness-oriented. Few easily identifiable patient characteristics were associated with expressed concerns or needs, suggesting that physicians need to individually assess patient needs. Terminally ill patients receiving palliative care had needs that were broad in scope. Given that few patient characteristics predicted responses, and that the majority opinion may not accurately reflect that of an individual patient, health care providers must be aware of the diverse concerns among this population and individualize assessment of each patient's needs and expectations.

Adolescent↗

PubMed2003

A good death in Uganda: survey of needs for palliative care for terminally ill people in urban areas.

OBJECTIVE: To identify the palliative care needs of terminally ill people in Uganda. DESIGN: Descriptive cross sectional study. SETTING: Home care programmes in and around Kampala that look after terminally ill people in their homes. PARTICIPANTS: 173 terminally ill patients registered with the home care programmes. RESULTS: Most of the participants had either HIV/AIDS or cancer or both; 145 were aged under 50 years, and 107 were women. Three main needs were identified: the control or relief of pain and other symptoms; counselling; and financial assistance for basic needs such as food, shelter, and school fees for their children. The preferred site of care was the home, though all these people lived in urban areas with access to healthcare services within 5 km of their homes. CONCLUSION: A "good death" in a developing country occurs when the dying person is being cared for at home, is free from pain or other distressing symptoms, feels no stigma, is at peace, and has their basic needs met without feeling dependent on others.

Adult↗

PubMed2002

[Attitudes of health centre users to diagnoses of terminal illness].

OBJECTIVE: To calculate the prevalence of users who want to know their diagnosis of terminal illness and to analyse the factors determining their decision. DESIGN: Descriptive, observational, cross-sectional study. SETTING: Six lists belonging to two Health Districts in Asturias Health Area III. PARTICIPANTS: On-demand users of the clinic, over 17 years old, selected by systematic randomized sampling stratified according to the number of consultations at the centre. MAIN MEASUREMENTS AND RESULTS: Through a questionnaire composed by the researchers and face-to-face interviews, social and personal variables and attitudes to a diagnosis of terminal illness were collected. The sample consisted of 388 people. A descriptive analysis and population calculations were made, with a logistical regression analysis to identify associated variables. RESULTS: 70.6% of those questioned (95% CI, 66%-75.1%) wanted to know their diagnosis, mainly on the basis of their right to the information (35.1%; 95% CI, 29%-40.6%). Most of these wanted to be informed by the doctor (81.9%; CI, 77.5%-86.5%). The variables significantly linked to a positive reply were: male (OR, 1.91; CI, 1.1%-3.4%), age (OR, 0.97; CI, 0.95%-0.99%), religious beliefs (OR, 0.2; CI, 0.1%-0.8% for believers), fear of pain and disability (OR, 3.8; CI, 1.2%-12%), and having previously thought about wanting to be informed (OR, 2.2; CI, 1.2%-4%). This last variable achieved the highest partial correlation coefficient (R, 0.12). CONCLUSIONS: Most users want to be informed of a diagnosis of terminal illness. The profile of the patient who wants to know the truth is: young male, non-believer, and someone whose main fears of terminal illness are pain and disability. The variable with most influence on the positive reply was having posed the question previously.

Adolescent↗

PubMed2002

Managing end-of-life care: comparing the experiences of terminally Ill patients in managed care and fee for service.

There have been no published empirical studies comparing the experiences of terminally ill patients in managed care organizations (MCOs) and those in fee for service (FFS). This investigation represents the first empirical study to systematically compare substantive outcomes between populations of terminally ill patients enrolled in MCO and FFS healthcare delivery systems. The investigators interviewed 988 patients whose physicians judged them to be terminally ill and 893 of their caregivers. Outcomes assessments were made in six domains: patient-physician relationship; access to care and use of health care; prevalence of symptoms; and planning for end-of-life care, care needs, and economic burdens. Overall, the two populations of terminally ill patients were found to have comparable outcomes, but several significant differences were present. MCO patients were more likely than their FFS counterparts to use an inconvenient hospital (P =.02), spend more than 10% of their income on medical care (P =.02), and have been bedridden more than 50% of the time during the last 4 weeks of life (P =.03). Caregivers of MCO patients were as likely as the caregivers of FFS patients to report a substantial caregiving burden (P =.59). Despite concerns about the threats of MCOs to the physician-patient relationship, few differences in the quality of the relationship between the two cohorts were found. Finally, terminally ill patients in MCOs did not show better experiences than those in FFS on any outcome measure. Additional research is required to explore how MCOs may improve upon the care available to dying patients.

Adolescent↗

PubMed2001

Cardiopulmonary resuscitation performed in patients with terminal illness in Chiang Mai University Hospital, Thailand.

BACKGROUND: The original target of cardiopulmonary resuscitation (CPR) was victims of acute cardiopulmonary arrest. However, the use of CPR has expanded to a wide variety of patients including those with terminal illness for whom CPR is futile. The objective of this study was to identify the incidence of CPR performed, the severity of illness and the outcome of CPR attempted in terminal illness in a teaching hospital. METHODS: Cardiopulmonary resuscitation attempted in terminal illness was retrospectively assessed from the medical records of hospital deaths with any one of eight life-threatening diagnoses during a 3.5-year period. RESULTS: Of 532 hospital deaths from terminal illness, 411 records (77.3%) were reviewed and abstracted. Most of the 411 patients had a low pre-CPR functional status. Generally, CPR was performed in 270 (65.7%) cases; 114 of those given CPR (42.2%) initially survived, but all died shortly after the manoeuvre. The high death rate following CPR may reflect both terminal illnesses and the severity of pre-event functional capacity of patients. CONCLUSION: The criteria for CPR in this group of patients need to be re-assessed and use of a Cerebral Performance Categories (CPC) score may be helpful.

Advance Directives↗

PubMed1979

Current attitudes of medical students and house staff toward terminal illness.

A survey questionnaire about attitudes toward terminal illness was administered to all medical students, interns, and all medical, surgical, and psychiatric residents at the Downstate Medical Center. The majority of students and new physicians surveyed reported that patients with terminal illness should be told their diagnosis--a reversal of attitudes as compared with those revealed by studies done before 1970. Most of the respondents also expressed the view that they would want to be told of their own fatal illness. The attitudes at different levels in medical school, internship, and residency did not differ significantly despite the differences in formal education and clinical experience of the respondents. Implications of these findings are discussed with particular emphasis on the need to teach an individualized approach to the dying patient.

Attitude of Health Personnel↗

PubMed2003

Existential concerns of terminally ill cancer patients receiving specialized palliative care in Japan.

BACKGROUND: Although alleviation of existential distress is important for terminally ill cancer patients, the concept of existential distress has not been fully understood. The aim of this study was to categorize existential concerns of Japanese terminally ill cancer patients and explore care strategies based on the categorizations. METHODS: A multicenter cross-sectional study in 88 terminally ill cancer patients receiving specialized inpatient palliative care was performed. The nurses explored patient existential concerns by asking several key questions, and recorded the answers that they considered typically described the patients' concerns. All statements recorded by the nurses were analyzed using content analysis methods. RESULTS: A total of 89 statements were subjected to analysis. The categories and their prevalence were: relationship-related concerns (22%; isolation, concerns about family preparation, conflicts in relationship), loss of control (16%; physical control, cognitive control, control over future), burden on others (4.5%), loss of continuity (10%; loss of role, loss of enjoyable activity, loss of being oneself), uncompleted life task (6.8%), hope/hopelessness (17%), and acceptance/preparation (25%). CONCLUSIONS: Existential concerns of Japanese terminally ill cancer patients were categorized as relationship-related concerns, loss of control, burden on others, loss of continuity, uncompleted life task, hope/hopelessness, and acceptance/preparation. These themes seemed to encompass universal human suffering beyond cultural differences, and this conceptualization may contribute to the development of effective therapeutic interventions to alleviate existential distress.

Adult↗