Advance Directives in Canada: An Ethical Imperative in a Legal Morass

Canadian health care providers acknowledge the ethical imperative to follow patients' advance directives for medical treatment. However, fear that advance directives diminish regard for the sanctity of life and authorize euthanasia has impeded the development of the relevant Canadian law. The Criminal Code retains outdated provisions that potentially penalize health care providers who follow advance directives. Some provinces have failed to pass modern legislation that authorizes instructional advance directives. The law is disharmonized and restrictive, limiting people's rights to make advance directives and hindering health care providers from following their patients' wishes.This paper reviews the morass of Canadian laws respecting advance directives to describe the frequent disparity between the ethical imperative and the legislation. The author argues that federal and provincial politicians are obliged to modernize the law. The legislation must enable capable people to create an advance directive that suits their life values and must help health care providers to follow their patients' treatment wishes.     

Changing perspectives on palliative care

In the United States, hospice and palliative care are two distinct expressions of the hospice interdisciplinary team approach to end-of-life care, which originated in Great Britain in the 1960s. The hospice movement developed largely as a home-care program and alternative to conventional care. Hospice regulations and reimbursement allowances limit services to patients who are expected to die within 6 months and who forego many common oncologic treatments. On the other hand, palliative care is a more recent academic, medically mainstream discipline that attempts to integrate the hospice approach into oncology and other areas of clinical medicine from the earliest phases of diagnosis and treatment. Palliative care entertains all appropriate forms of care at any phase of an illness. In this review, we describe the key goals of palliative care, which include excellent pain and symptom control, psychosocial and spiritual support for the patient and family, informed decision-making, and coordinated services across the continuum of care. We focus on selected recent developments that are important to oncology practice: the role of artificial nutrition; management of malignant small bowel obstruction; communication tasks, such as information sharing, recognition of patient preferences, advanced-care planning, and bereavement care; and ethical principles related to the hastening of death.     

Using the Values-Based History to Fine-Tune Advance Care Planning for Oncology Patients

There is no standardized approach to the discussion of advanced care planning. One approach to discussing advanced care planning involves the use of a values history. The values history focuses on questions related to overall health, personal relationships, and independence, as well as symptoms. The values history facilitates communication with the patient and allows the patient to express their view. This approach to patient communication is less threatening to patients and does not force the patient into thinking that they need the right answer. Values-based directives are less intrusive on a doctor's skill in making appropriate clinical decisions. They ask questions that require no technical skill and are easily done by other members of the health-care team. Values histories are useful in a wide range of situations where the doctor needs to understand the patient as a person. Compared to traditional, medicalized advance directives, values histories are less subject to the objections of not being clearly established at the time of their writing, or applicable in the circumstances that subsequently arise as in this case. They can help to validate preferences about treatment and also indicate appropriate courses of action that were not, or could not, be covered by traditional advance directives alone. This article illustrates the use of a values-based history in a patient with advanced head and neck cancer.     

Augmenting advance care planning in poor prognosis cancer with a video decision aid: a preintervention-postintervention study

BACKGROUND:

The authors tested whether an educational video on the goals of care in advanced cancer (life‐prolonging care, basic care, or comfort care) helped patients understand these goals and had an impact on their preferences for resuscitation.

METHODS:

A survey of 80 patients with advanced cancer was conducted before and after they viewed an educational video. The outcomes of interest included changes in goals of care preference and knowledge and consistency of preferences with code status.

RESULTS:

Before viewing the video, 10 patients (13%) preferred life‐prolonging care, 24 patients (30%) preferred basic care, 29 patients (36%) preferred comfort care, and 17 patients (21%) were unsure. Preferences did not change after the video, when 9 patients (11%) chose life‐prolonging care, 28 patients (35%) chose basic care, 29 patients (36%) chose comfort care, and, 14 patients (18%) were unsure (P = .28). Compared with baseline, after the video presentation, more patients did not want cardiopulmonary resuscitation (CPR) (71% vs 62%; P = .03) or ventilation (80% vs 67%; P = .008). Knowledge about goals of care and likelihood of resuscitation increased after the video (P < .001). Of the patients who did not want CPR or ventilation after the video augmentation, only 4 patients (5%) had a documented do‐not‐resuscitate order in their medical record (kappa statistic, ?0.01; 95% confidence interval, ?0.06 to 0.04). Acceptability of the video was high.

CONCLUSIONS:

Patients with advanced cancer did not change care preferences after viewing the video, but fewer wanted CPR or ventilation. Documented code status was inconsistent with patient preferences. Patients were more knowledgeable after the video, reported that the video was acceptable, and said they would recommend it to others. The current results indicated that this type of video may enable patients to visualize “goals of care,” enriching patient understanding of worsening health states and better informing decision making. Cancer 2012. © 2012 American Cancer Society.     

Advance directives and life-sustaining treatment: a legal primer

Advanced directives are a natural extension of a patient's right to self-determination of what actions will be taken upon his or her body. As such, instructional advanced directives such as living wills and DNR orders represent important patient preferences that must be adhered to in the health care context. In addition, health care proxies provide the patient with an authority for decision making in the event of incapacity. Overall, advanced directives provide health care providers, patients, and patient families with control over the kinds of care they do and do not desire at the end of life. Understanding the legal status of these instruments will provide the physician with another tool to advocate effectively for the patient.     

People with cancer have the right to expect the best possible treatment and care *

Planning care for the patient who has cancer in his own home is at the same time similar, yet profoundly different from planning care for the patient in hospital. The similarity arises out of the diagnosis and prognosis. The difference lies in the intermittent nature of home nursing as opposed to the continuity of hospital care. Although professional care is enlisted, the bulk of the care will be given by non-professionals, such as the patient's family and friends. Hospital doctors do not identify the same sort of goals for terminally ill patients as their hospice and their nursing colleagues in general hospitals (Lunt, 1985). They rarely include the needs of relatives in their plans and have a much smaller range of goals. Therefore, they need to be encouraged to participate with other team members and to listen to the views of their multi-disciplinary colleagues. Everyone who is responsible for discharging a patient into the community must be aware of the appropriate services that can be provided.     

Ethik-Konsil in der Onkologie

Background

Ethical dilemmas that arise during the treatment of patients in oncology are self-evident to any clinician or lay person who has cared for individuals battling cancer. Issues related to autonomy, advance directives, surrogate decision making, communication barriers, goals of care, treatment decisions, end of life decisions and admission to the intensive care unit of advanced cancer patients are emotionally laden and complex; therefore, circumstances can arise in which moral dilemmas or conflicting values are not so easily resolved. Clinical ethics consultation is a structured approach to assist in mitigating ethical questions and conflicts through careful deliberation and guidance among the parties involved, particularly in a setting of standardized team or family conferences.

Method

Research and analysis of the current literature.

Objective and conclusion

The resolution process involves a reasoned approach to the ethical or moral dilemma or conflict in which multiple perspectives and points of view are integrated into an ethically justifiable and workable solution that is driven by a shared decision-making process. In respect to emergency conflict interventions by an ethics consultation it is hoped that advance care planning will be able to minimize requested ethics consultations.

     

Perspectives, preferences, care practices, and outcomes among older and middle-aged patients with late-stage cancer.

PURPOSE: To evaluate relationships among physician and cancer patient survival estimates, patients' perceived quality of life, care preferences, and outcomes, and how they vary across middle-aged and older patient groups. PATIENTS AND METHODS: Subjects were from the Study to Understand Prognoses and Preferences for Risks of Treatments (SUPPORT) prospective cohort studied in five US teaching hospitals (from 1989 to 1994), and included 720 middle-aged (45 to 64 years) and 696 older (> or = 65 years) patients receiving care for advanced cancer. Perspectives were assessed in physician and patient/surrogate interviews; care practices and outcomes were determined from hospital records and the National Death Index. General linear models were used within age groups to obtain adjusted estimates. RESULTS: Although most patients had treatment goals to relieve pain, treatment preferences and care practices were linked only in the older group. For older patients, preference for life-extending treatment was associated with more therapeutic interventions and more documented discussions; cardiopulmonary resuscitation (CPR) preference was linked to more therapeutic interventions and longer survival. For middle-aged patients, better perceived quality of life was associated with preferring CPR. In both groups, patients' higher survival estimates were associated with preferences for life-prolonging treatment and CPR; physicians' higher survival estimates were associated with patients' preferences for CPR, fewer documented treatment limitation discussions about care, and actual 6-month survival. More discussions were associated with readmissions and earlier death. More aggressive care was not related to outcomes. CONCLUSION: Fewer older patients preferred CPR or life-prolonging treatments. Although older patients' goals for aggressive treatment were related to care, this was not so for middle-aged patients. Aggressive care was not related to prolonged life in either group.     

Palliative care and oncology: integration leads to better care

The timely integration of palliative care services into standard oncology care is essential to providing comprehensive individualized care for patients with advanced and incurable cancer and their families. Herein we discuss five important areas in which this integration is critical to optimize management, namely: symptom management, transitioning from disease-focused care to palliative care, discussing goals of care and advance care planning, community care, and psychosocial support for the patient and family.     

Research sensitivities to palliative care patients

This paper considers the methodological challenges of researching the health care experiences of palliative care patients and their families. Difficulties in defining a 'palliative care patient' are highlighted, and the question of whether there are specific ethical issues when researching palliative care explored. Methodological issues are discussed, including the negotiation of access via health professionals, the choice of appropriate data collection methods and tools, the consequences of high attrition rates and the use of retrospective surveys of bereaved relatives. Key areas for research are identified. These include patients' and families' experiences of research participation, the impact of being approached on those who decline, how the characteristics of those who participate differ from those who do not and the likely impact of this on findings. Research is also needed into patient and family motivations for participation, and whether and how these change as the disease progresses. To ensure that the voices of palliative care patients and their families are heard by both service providers and policy-makers, research in this area needs to address the methodological challenges raised in this paper, as well as continuing to explore users' views.     

Questionnaire survey for doctors in the area of cooporation efforts when a terminal cancer is transformed to home medical care

In order to smoothly transform a terminal cancer patient from hospital to home medical care, we surveyed based on questionnaires to examine doctor's roles of each primary and regional hospitals and its cooperation among the hospitals. We established two types of questionnaires for two groups, a primary doctor group and a regional doctor group, and distributed and collected them. A total of 123 doctors (35 primary doctors and 88 regional doctors) responded out of 185 doctors, and the collection rate was 66.5%. The survey result indicated that there were significant differences among the primary and regional doctors in evaluating patient's family members for understanding of the patients disease at the time of discharge, how to give a treatment to the patient, alleviating patient's disease conditions and a mental support given by doctor to family members from the hospital. Meanwhile, about 70% of regional doctors answered that family members had some sort of anxieties during a night and at the time of emergency to care the patient. It also revealed that about 70% of regional doctors had experienced troubles in coordinating with a primary hospital. On the other hand, 62% of primary doctors answered that they always provided necessary care to the patient at the time of emergency. In providing a safe and a high degree of QOL in home medical care settings, it is important to have specific common purposes among the two groups of doctors and patients. Furthermore, the primary and regional doctors have to be cooperative, specify duty roles when the patient is transformed to home medical care, and to have ways to accomplish mutual common goals for patients.     

Follow-up care of breast cancer survivors

Breast cancer survivors may have several medical and psychosocial concerns in follow-up care. Women with a history of breast cancer should be followed for local-regional recurrence or metastatic disease, as well as for the development of a second primary breast cancer in the contralateral breast. Regular follow-up visits can foster an ongoing patient-clinician relationship both to ensure adequate surveillance and so that symptoms of recurrence or complications of therapy will be reported by the patient and addressed promptly. There are multiple possible long-term complications that may arise following breast cancer treatment, many of which may be ameliorated with various therapies. Clinicians can also provide guidance and counseling as well as psychosocial support to patients regarding medical and psychosocial decisions that may be affected by their personal history of breast cancer.     

An overview of home care for patients with cancer.

This article describes some of the restrictions and obstacles that patients with cancer may face in home care. Though discharge from the hospital to home can be overwhelming and frightening, nurses and other healthcare professionals can assist the patient and caregiver to ensure a smooth transition. Issues such as treatment options, reimbursement, quality assurance, legal issues, and need for research are addressed with the purpose of providing guidance and direction for practitioners in all settings involved with patients with cancer who are in need of nursing care in their homes.     

Palliative home care

Palliative home care supports the quality of life (QOL) of a patient and family as a whole. Team care is an effective method corresponding to the various needs of the patient and family. Cooperation of various types of professions can meet the need for high-quality outpatient medical care. Social work serves as a coordinator of the care team. One of its important tasks in palliative home care is support of the patient discharge procedure from the hospital. Discharge from the hospital must be carried out before the patient's condition worsens. Prompt support of the discharge is indispensable so that the patient may spend substantial time with high QOL at home. Palliative home care means care for the dying. Therefore, spirituality issues are important. Palliative home care must respect and understand the spirituality of the patient and family. The patient can be discharged from the hospital in peace when there is general support for the physical, psycho-social and spiritual needs of both patient and family.     

The influence of family willingness to home palliative care

In the current state of medical treatment, cancer patients discharged from hospital to home have been increasing. For enforcement of home palliative care, we think that family willingness to care for the patient is very important. We examined how much the willingness of a family to care for the patient influences the enforcement of home palliative care and the factors that influence the willingness of care given by the family. When the family willingness to care for the patient was low, there were significantly lower patient deaths at home. Meanwhile, the length of home care was also significantly short. In fact, there was a tendency to influence the outcome of home palliative care by increasing the willingness to care for the patient by the family when the number of caregivers was high, additional medical treatment given to the patient and a good QOL at the time of discharge. Based on the STAS evaluation result, the willingness to care for the patient by the family was significantly higher when anxiety between the patient and his family is low, understanding of the state of the disease is good and communication between the patient and the family is good. We thought that the willingness to care for the patient provided by the family influences greatly in order to enforce home palliative care to be successful. We also thought that it is important to provide appropriate information to the patient and his family, and to resolve individual patients' problems as well.     

Preferences for active and aggressive intervention among patients with advanced cancer

Background  

Intrinsic to "Patient-Centered Care" is being respectful and responsive to individual patient preferences, expressed needs, and personal values. Establishing a patient's preferences for active and aggressive intervention is imperative and foundational to the development of advance care planning. With the increasing awareness and acceptance of palliative philosophies of care, patients with advanced cancer are increasingly transitioning from active and aggressive medical management (AAMM) to conservative palliative management (CPM).     

The family conference in oncology: benefits for the patient, family, and physician

The family conference (FC) is a forum for communication with both the patient and family to discuss essential information about medical, educational, and psychosocial needs. It ensures appropriate decision-making, which is integral to comprehensive cancer care. Inclusion of the family creates opportunities and challenges. The main opportunities are for the family to share support for the patient and collaborate with the medical team. This can ease adaptation throughout the illness course with better adherence to recommended treatment plans and greater satisfaction with medical care. The challenge is to manage communication to evolve understanding when treatment outcomes are not curative, and to meet the medical information and psychosocial needs of the patient and family. The FC aim is to give the family confidence by: (1) providing a calm discussion and understanding the illness and treatment; (2) offering a sense of safety that patient's goals will be balanced by the impact on the family caregivers; (3) affording the opportunity to connect and sustain each other; (4) sharing hope and mutual empathy; and (5) maintaining self-efficacy to manage their needs. Using the FC to discuss the plan of care and at the same time assisting the family to process the impact of the illness optimizes benefit for the patient, family, and physician.     

Critical palliative care: intensive care redefined.

In the area of end-of-life bioethical issues, patients, families, and health care providers do not understand basic principles, often leading to anguish, guilt, and anger. Providers lack communication skills, concepts, and practical bedside information. Linking societal values of the sanctity of life and quality of life with medical goals of preservation of life and alleviation of suffering respectively provides an essential structure. Medical care focuses on cure when possible but when the patient is dying, the focus switches to caring for patients and their families. Clinicians need to learn how to balance the benefits and burdens of medications and treatments, control symptoms, and orchestrate withdrawal of treatment. Finally, all need to learn more about the dying process to benefit society, their own families, and themselves.     

The health economics of palliative care

Only a few studies have assessed the economic outcomes of palliative therapy. The major areas of interest include hospice care, the process and structure of care, symptom management, and palliative chemotherapy compared to best supportive care. Compared with nonhospice care, hospice care saves at best 3% of total care costs. Advance directives done early in the disease course may save end-of-life care costs, but when done in the hospital do not save money or influence care choices. Nurse coordination of palliative care maintained clinical outcomes of dying patients and saved 40% of costs. A structured ethics review of those likely to die in the intensive care unit also appears to match the type of care to the outcome, and save costs. There are remarkably few randomized clinical trials of pain and symptom control interventions in end-of-life care, so few conclusions can be drawn about current treatments. There are no examples of chemotherapy that save money compared to best supportive care. Current data suggest that changes in palliative care cost can only come from dramatic changes in how we provide care. One model is coordinated, expert, high-volume care that can prevent end-of-life hospitalization, with early use of advance directives. Preliminary data from our program support the hypothesis that costs may be reduced by 40% to 70%.     

Home medical treatment and the transfer of medical care of patients at Tokyo Women's Medical University

We inquired the current status of our home care transfer patients who are highly dependent on medical treatment, and examined the factors that are needed to pay attention to keep a high level of QOL and to give a better long-term home care. The subjects are 380 patients who requested a homecare transfer. The following items were inquired: (1) the length of time from the request to home care transfer, (2) the length of home care, and (3) a place for the peaceful death. In addition to that, we asked for additional remarks. Fifty nine (59) % of the patients are over 65 years old, and 69% of the diseases were malignant neoplasms. The number of patients that requested a home care transfer was 68%, and for 70% of the patients it took 20 days or less after requesting a home care transfer to leaving the hospital. Forty five (45) % of the patients died within one month of home care, 70% within 2 months, 37% died at home and 45% died after reentering the hospital. There were many time consuming cases with respect to: guidance about medical treatment, guidance about alleviation of the symptoms and guidance about adjusting a patient out of the hospital. There were also cases where the patients had to be readmitted to the hospital. In fact, some of the patients died from an aggravation of disease symptoms and a breakdown of nursing care right after the start of home care. In cases of terminal stage patients with limited prognosis, we found that a long-term preservation of a patients' stable condition would lead to fill a satisfaction of patients cared at home. It is important to start adjusting things like the coordination of medical examination and treatment with local institutions in which a status of the patient and family needs is fulfilled individually at the earliest time, in order to reduce anxiety including the length of hospitalization in short by alleviating disease symptoms.