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Among Italian hospital physicians and general practitioners, 17.9% endorsed euthanasia or assisted suicide for terminally ill patients and 79.4% endorsed withholding or withdrawal of treatment. Need for attention to quality of life and pain control also emerged.
BACKGROUND: Palliative medicine is developing as a distinct clinical discipline worldwide. The U.S. literature describes goals for education in palliative medicine, yet this literature lacks validated educational objectives. METHOD: To develop and validate appropriate educational objectives for medical training in the care of the terminally ill, 200 randomly selected members of the Academy of Hospice Physicians were asked in 1992 to evaluate 39 educational objectives by an item-objective congruence procedure. Each objective was rated as -1 (inappropriate), 0 (unsure), or 1 (appropriate). RESULTS: Of the 200 members surveyed, 127 (64%) responded. Of the 39 objectives, 34 were considered valid, with a mean score of > or = .8. The index of content validity was .87. The objectives not considered valid all dealt with nonmedical issues related to hospice or palliative care. CONCLUSION: This study validated 34 educational objectives for medical training in the care of the terminally ill. Training programs using these objectives, amended for specific audiences, should be included in the various levels of U.S. medical education.
The number of high quality health service research studies in care of the terminally ill patient is very limited. For some areas of care, such as coordination of care for the dying, the clinical benefit is not clear, but the cost-effectiveness evidence seems compelling enough to provide services. For others, such as the use of advanced directives or hospice care, the ethical and medical rationale is compelling, but the evidence of clinical benefit or better cost-effectiveness is limited.
Blood transfusion is a widely used supportive treatment of cancer patients, most of whom are anemic. In the particular subset of cancer patients that undergoes chemotherapy, blood transfusion is viewed as an essential part of supportive care. However, the place of blood transfusion in anemic terminally ill cancer patients is far less established. There are no well-defined blood transfusion guidelines ("transfusion trigger") for these patients. Hence, transfusion decisions are greatly influenced by the personal views of the medical team. Therefore, a mail survey of 500 physicians (from several specialties) and nurses was initiated to assess their personal opinions on this topic. The overall response rate was relatively high (70%). There was broad agreement that blood transfusions, as a rule, should not be withheld from terminal cancer patients. On the other hand, only nurses were of the opinion that these patients should be transfused "as usual." Significantly, there was but a slight majority (53% of participants) that was of the opinion that transfusions to these patients do not prolong suffering. There emerged a short list of agreed-on suggestions for blood transfusion--namely, Hb level < or = 7 mg/dL, active bleeding (acute and/or occult), functional deterioration of the patient, presence of anemia resulting from chemotherapy, anginal symptoms, dyspnea, and worsening congestive heart failure. The agreed-on suggestions for transfusions in terminally ill cancer patients may serve as a reasonable physician standard for this complex clinical, medical-legal, and emotional issue.
The purpose of this hermeneutic study was to investigate the essence of spirituality of terminally ill patients. In-depth unstructured interviews were used as the method for data collection. In the six-month period of data collection, the researcher was in the role of a hospice palliative care consultant who directly took care of the subject patients in a hospice ward of a teaching hospital. The six subjects were selected purposively according to various demographic backgrounds. Interview transcripts provided the data for analysis. The results were composed of four constitutive patterns and ten themes. The first constitutive pattern was "Communion with Self" which included three themes: (1) Self-identity--spirituality is the discovery of the authentic self. (2) Wholeness--a human being is full of contradictions but still in wholeness. (3) Inner peace--spirituality is negotiating conflicts for self-reconciliation. The second constitutive pattern was "Communion with others" which included two themes: (1) Love--spirituality is a caring relationship but not an over-attachment to others. (2) Reconciliation--spirituality is to forgive and to be forgiven. The third constitutive pattern was "Communion with Nature" which included two themes: (1) Inspiration from the nature--spirituality is the resonance of the marvelous beauty of nature. (2) Creativity--spirituality is conceiving imaginatively. The fourth constitutive pattern was "Communion with Higher Being" which included three themes: (1) Faithfulness--spirituality is keeping the trust dependably. (2) Hope--spirituality is claiming possibilities. (3) Gratitude--spirituality is giving thanks and embracing grace. The scientific rigor of this qualitative research as well as the strength and limitations of the study are reported. Implications for hospice palliative care and future research are recommended.
To clarify the psychiatric liaison issues in cancer care, questionnaires were distributed to physicians at 31 teaching hospitals in Japan, including cancer centers and psychiatrists at 197 teaching hospitals. Data from 329 physicians and 156 psychiatrists showed that the majority of the physicians felt troubled by the psychiatric problems of terminally ill patients. However, actual psychiatric referrals were infrequent. An important factor that interferes with appropriate psychiatric referrals for cancer patients is that most physicians do not usually inform patients of a cancer diagnosis. This, it seems that close communication between physicians and psychiatrists is essential in caring for terminally ill cancer patients in the context of Japanese culture, when the psychiatric consultations are offered.
Comfort care for cancer patients in the terminal stage has been the goal of hospice programs since their inception. Among the many treatment modalities available to homebound patients, transfusions have been little studied for their effects on advanced disease symptoms, particularly for those in the terminal phase. Our work in a hospital-based home care program established in 1978 led us to believe that blood transfusions neither slowed the progress of symptoms nor relieved their severity. Our hypothesis being that transfusions do not improve or significantly change the quality of life of terminally ill patients, we studied 24 men and women with various forms of advanced cancer. The only significant clinical difference between pre- and post-transfusion variables was in hematocrit. In the subjective testing, the only significant difference was in the quality of life index completed by the patient. This result could be interpreted as a positive psychological benefit from blood transfusions. The results of other subjective tests, although statistically less significant, also showed a trend toward psychological benefit from transfusions. It would be necessary to carry out studies with a larger sample to conclude that this is indeed the case.
Nursing home care for terminally ill cancer patients was organized according to nursing care plans that were based on diagnoses as recommended by the North American Nursing Diagnosis Association (NANDA). This study was carried out among a sample of 40 patients receiving home health care for a period of 1 to 19 weeks. More than 697 nursing diagnoses were identified in the study. The most frequently recorded nursing diagnoses were anxiety, constipation, and diminished food intake. Fifteen of the 40 patients in the study were able to complete a weekly self-report of their symptoms. The patients' own descriptions of their symptoms were then compared with their symptoms as identified by nursing staff. There was a congruence in 63% of reported instances. Although nurses' assessments were not always in agreement with the symptoms reported by the patients, agreement was more frequently found with somatic symptoms than with psychological ones. One conclusion is that nursing plans should incorporate multidimensional methods for assessing patients' real needs.
Patient-controlled analgesia (PCA) is a relatively new therapeutic modality which has allowed postsurgical patients to safely and effectively self-administer doses of intravenous narcotics via a syringe pump and sequencing device. A pilot study was designed to evaluate PCA's safety and effectiveness in the terminally ill cancer patient. Eight patients whose chronic pain was not adequately controlled by oral narcotics were permitted to use PCA for a minimum of 48 hours. Respiratory rates, sedation rankings, and pain rankings indicated these patients achieved satisfactory analgesia with a minimum of sedation and experienced no respiratory depression. Three patients were switched to oral regimens using PCA dosing as a guide. Pain and sedation rankings were similar to those registered while exclusively on PCA. This self-dosing technique was judged to be safe, effective, and able to accommodate wide fluctuations in analgesic need when treating pain in the terminally ill cancer patient. The results obtained in these patients support further trials using PCA to individualize oral analgesic regimens.
Large bowel obstruction in the terminally ill patient can be difficult to manage. We describe a patient with sigmoid colon obstruction caused by metastatic prostate cancer in the pelvis who required hospitalization because of severe pain and obstructive symptoms. Treatment with an endoscopically placed self-expandable metal stent allowed the patient to have immediate resolution of symptoms and to receive hospice care at home.
When terminally ill care patients are referred for hospice care, the hospice nurse is ideally the first contact person and makes the preliminary assessment. The entry portion of a case-sheet when completed will provide the following information: (i) demographic data; (ii) phasing; (iii) problem areas; (iv) strategies suggested; and (v) input of other care-providing team (CPT) members. Formal in-depth assessment takes place as soon as possible. The input of medical and paramedical CPT members is noted and correlated at weekly case discussion groups which will provide ongoing suggestions, guidelines and internal support.
We recently completed a grounded theory study examining nutritional care experiences in advanced cancer from the perspective of patients (n=13), families (n=23), and health care providers (n=11) (1). That work generated important information about adult family members' perceptions and behaviour regarding the nutritional care their terminally ill adult relative received while hospitalized on an inpatient palliative care unit. An overview of the inductively derived model that emerged from that work has been reported elsewhere (2). This article provides a more detailed description of one of the major sub-processes of the model regarding family member responses to declining oral intake and weight loss in a terminally ill relative-the sub-process of "fighting back: it's best to eat." The strategies family members use when fighting back, and the consequences of these strategies for patients, family members, and health care providers are reported. Implications for practice and research are provided.
There are many problems associated with the discharge and management of terminally ill patients with cancer. A 70-year-old patient with gastrointestinal cancer obstructing his intestinal tract, who is receiving total parenteral nutrition through a central intravenous catheter is being prepared for his discharge from hospital. The effective management of the discharge of this patient and introduction to home care, consisting of visits by physicians and community nurses is described.
The primary caregivers (mean age = 63 yr.) of 28 terminally ill veterans (mean age = 67 yr.) who were living at home were surveyed for their concrete and psychosocial needs. The caregivers also completed the Beck Depression Inventory, the Life Satisfaction Index, the Provision of Social Relations scale, and the Burden Inventory. The rank order of concrete and psychosocial needs is reported for these caregivers. Increased scores on depression were associated with decreased life satisfaction as was low social support. Not surprisingly, higher numbers of concrete and psychosocial needs were associated with increases in depression.
"Desire-to-die" statements made by people with terminal illness may be expressions of depression, suicidal intent, or coping. Careful evaluation can help the social worker understand the meaning of a particular patient's statement. The framework presented in this article suggests that all patients expressing a wish for death be assessed for both depression and suicide risk. This assessment can identify those patients who are depressed or suicidal, as well as those using these statements as a way of coping or as an indication of a rational choice for suicide. Differentiating among patients' meanings in this way leads to appropriate interventions.
The author reviews and continues the debate initiated by her recent paper in this journal. The paper was critical of certain aspects of palliative medicine, and caused Ashby and Stoffell to modify the framework they proposed in 1991. It now takes account of the need for artificial hydration to satisfy thirst, or other symptoms due to lack of fluid intake in the terminally ill. There is also a more positive attitude to the emotional needs and ethical views of the patient's family and care-givers. However, clinical concerns about the general reluctance to use artificial hydration in terminal care remain, and doubts persist about the ethical and legal arguments used by some palliative medicine specialists and others, to justify their approach. Published contributions to the debate to date, in professional journals, are reviewed. Key statements relating to the care of sedated terminally ill patients are discussed, and where necessary criticised.
Although the dehydration-rehydration problem in end-of-life care is one of the most important issues, clinical indications of hydration therapy have not been clarified because the pathophysiology is poorly understood. To explore the physiological changes of fluid status in terminally ill cancer patients, a prospective observational study was performed. We obtained 9 pairs of blood samplings from hospice inpatients with irreversible bowel obstruction who underwent two or more laboratory examinations during the admission periods. The plasma renin activity (PRA) and brain natriuretic peptide (BNP) were measured, in addition to basic laboratory tests performed as clinically required. A chart review evaluated the degree of fluid retention symptoms. In 7 patients receiving intravenous rehydration of 700-2200 ml/day, the mean PRA level significantly increased from 3.5+/-2.5 ng ml(-1) h(-1) to 11+/-8.2 ng ml(-1) x h(-1) ( P=0.047), and the mean BNP level significantly decreased from 52+/-34 pg/ml to 22+/-14 pg/ml ( P=0.047). Edema, ascites, and pleural effusion/pulmonary edema deteriorated in 5, 3, and 5 patients, respectively. In 2 patients without rehydration therapy, peripheral edema deteriorated with increased PRA levels (0.5 to 20 ng ml(-1) x h(-1), 0.4 to 8.7 ng ml(-1) x h(-1), respectively). In conclusion, intravenous volume depletion with fluid retention symptoms was observed in terminally ill cancer patients with intestinal obstruction both receiving and not receiving intravenous hydration. The pathological mechanism hypothesized is the fluid shift from the intravascular compartment to the interstitial spaces.
This article emphasizes the value of a therapeutic presence in terminal death situations. An unusual clinical case illustrates the point. The presenting issue was aggression between an adult son and father. It soon became apparent, however, that this son was profoundly enmeshed with his mother. During the course of family therapy the father died, and then the mother was diagnosed with cancer. The therapist changed therapeutic goals and attended to the relationship between mother and son. He made home visits to the mother and the surviving son. She seemed to die peacefully and the son moved on with his life, which prior to the death of his mother would not have appeared likely because of his profound dependence on her. Resolving pathological attachment is not easy. Attachment theory refers to the affectional bonds or attachments, initially between child and parent and later between adult and adult. It is suggested that terminal illness and death can, with help of a therapist, alter this attachment bond, even though the literature on adult dependency and attachment does not refer to death in this manner.