  |
|
| Comfort Goals |
Health Care Goals: Trajectory of Cure and Palliative Care Making the choice
Such tendencies are consistent with the primary focus of the American health care system, providing acute care intending to cure illnesses and diseases.� Abundant technological advances have emerged because of this focus and many procedures are available to treat illnesses and thereby extend life.� This focus, however, has resulted in Americans living with chronic illness and has not drastically improved the quality of life years as discussed in the Impact modules. The model or plan of care currently used in the United States focuses on aggressive treatment of the disease or illness at the time of diagnosis and along a treatment continuum until shortly before it becomes clear that death will occur.� At this recognition, pain relief and palliative care become the treatments of choice (Figure 1).2 This plan of care is insufficient to promote optimal proactive management of the symptoms that manifest in people with life limiting illnesses. A new care model has been proposed by the World Health Organization (WHO) and is appropriate for people with life limiting illnesses.� In this new model, disease (cancer, cardiac, pulmonary, hepatic, renal, etc.) treatment, pain relief, and palliative care all begin at diagnosis and are used concurrently with disease treatments up to death. This plan is especially important for the patient with illnesses associated with a short disease (Figure 2). 2
The WHO model shows that even though disease treatment, pain relief, and palliative care all begin at diagnosis, the disease treatments are more prominent near diagnosis, especially early in the disease trajectory.� If the illness is diagnosed at an advanced stage or as the disease progresses, pain relief and palliative care increase in importance and curative therapies are used less aggressively. The significance of this proposed model is that attention to the patient�s quality of life is recognized from the time of diagnosis instead of aggressively attending to symptoms only when the patient is near death. Relief of symptoms concurrent with disease treatment and only relief of symptoms when further disease treatment is undesired are cornerstones of effective palliative care. Many experts argue that patients would be more willing to accept hospice care if they did not have to fear loss of potential life-prolonging therapies. The WHO model does not force the choice between disease treatment and palliative comfort care, but argues for providing both in balance with the patient�s needs and responses. Because of the short time for intervention in some illnesses, there is a compelling need for nurses to implement the proposed WHO model, be proactive, aggressively manage symptoms, and attend to life closure and bereavement needs. In other illnesses with longer trajectories, there is urgent need for on-going, continuous care also focused on these needs. On-going, continuous care
These findings show the need to publicize availability of hospice services and enhance individual and community levels of discussions about end-of-life care. It is important that Americans know that hospices and palliative care programs are available to provide the high quality care they want and need at the end-of-life transition. Unfortunately, research findings indicate that� �most Americans are completely unaware of hospice services.
An important role for health professionals is to educate patients and their families about the services available from hospices and palliative care programs. Additionally, health professionals can serve people facing the end-of-life transition by helping them to clarify their goals for acute, curative intent treatments and always provide palliative care for symptoms associated with their disease or illness. On-going, continuous care is a vital need and nurses are uniquely positioned to assure that patients and families facing a life limiting illness get this need met.� An appropriate starting point is to clarify preferences for end-of-life care.
Clarifying Values and Priorities: Patient, Family, Healthcare Providers Health professionals provide active, desirable, and important comfort care to the dying. �In order to provide quality comfort care to the dying, health professionals elicit, document, display, and assist in implementation of the patient�s wishes for end of life care. This comfort care service is not assisted suicide or euthanasia. Health professionals can use many techniques to assist patients and families to begin the dialogue about their preferences for end-of-life care.� One technique for facilitating the discussion is available on the web at http://www.agingwithdignity.org/ where one can view the Five Wishes.� The Five Wishes and the Five Wishes Video can also be obtained by visiting the following web site: http://www.agingwithdignity.org/order.html. Another technique is available to help patients and families sort out their priorities or specify their goals. comfort goals activities.doc Discussions about priorities are important in order that others can speak for a person when the person is not able to speak for him/herself as discussed in the Ethics module.� People differ tremendously in their priorities and goals.� These differences can be very individual or sometimes related to a person�s faith, ethnic heritage, education or other cultural characteristics. The only way to know a person�s values and goals is to ask the person or facilitate values clarification or goals setting discussions among the person, family and health professionals.� Norlander and McSteen4 provide a systematic plan by which to engage the patient and family about comfort goals at the end of life. The assessment guide and typical questions are presented on the following web site. http://www.nursingcenter.com/ce/article.cfm?id=4853CF66-AA15-11D4-83E0-00508B605149, accessed July 9, 2001. It is not uncommon for health professionals to differ amongst themselves in their priorities, values and goals. Hence, it is important for discussions to occur amongst health professionals and for the care they provide to stay focused on the patient�s priorities.� For example, Table 1 shows some of the variability in goals among a patient, family and their nurse caregiver. � Table 1.� Care Goals from the Perspectives of the Patient, Family and Nurse.
Adapted from: (p. 62)5 Cassell and Foley 6 published an emerging consensus among medical specialties regarding the core principles guiding end-of-life care (Table 2). These core principles have been adopted or adapted and adopted by many of the medical specialty organizations. Table 2. Core Principles for End-of-Life Care. Clinical policy of care at the end of life and the professional practice it guides should:
Source: 6, used with permission.
The American Medical Association (AMA) contends that since people in the last phase of life seek peace and dignity, they should be able to expect these eight elements of care from physicians, health care institutions, and the community:7
In summarizing its role in caring for patients at the end of life, the AMA referred to the AMA/Robert Wood Johnson Compassionate Competent Care Initiative, whose goal is to ensure that practicing physicians are equipped with the knowledge and skills to provide the best possible care for dying patients. The initiative seeks to educate physicians throughout the country in the practicalities of discussing and completing advance care planning and in the goals and interdisciplinary clinical skills of palliative care. The program also seeks to promote endorsement of these skills by the leadership and general culture of medicine. Source: 6, used with permission. The American Nurses Association position related to end of life decisions was last updated in 1998.� The brief document refers to the 1994, position on "Assisted Suicide" which asserts that nurses should not participate in assisted suicide, stating such acts violate the Code for Nurses with Interpretive Statements8 and the ethical traditions of the profession. ANA's position statement acknowledges that there are many ethically justified end-of-life decisions and states that "nurses, individually and collectively, have an obligation to provide comprehensive and compassionate end-of-life care which includes the promotion of comfort and the relief of pain, and at times, foregoing life-sustaining treatments." 9 Reconciling the priorities is the first step to providing patient-family centered nursing care. Conflicting goal or mutually exclusive goals are particularly challenging, but essential for effective end-of-life care. Negotiation and conflict resolution skills are needed in some situations. Effective end-of-life care is facilitated by a calm presence focused and centered on comfort and dignity for the person facing the end-of-life transition.� Nurses need to recognize and respond to changing goals over the trajectory of the dying process. Setting goals begins with the initial assessment and is ongoing with each visit. The patient�s and family members� responses to the physical and emotional challenges of the dying process are variable and require continual reassessment, active listening, guiding and coaching about potential threats to comfort and how to prepare in advance for maintaining comfort. For example, a patient who has unfinished business and is not ready to die may change his/her stance and opt for aggressive resuscitative measures until the life closure activities have been completed.� Nursing goals are continually adjusted to center care on the patient�s and family�s priorities.
Patient and Family Centered End-of-life Care Health professionals enact several roles as they provide comfort care. Coaching the patient and family to cope with crises is an important role for nurses. When symptoms are not well controlled, crisis often occurs and must be managed within the context of family dynamics. Patient-centered and family-centered care in which the health professional makes an implicit promise to provide active comfort-care and implements care on that promise are important cornerstones for effective end-of-life care. Facilitating wishes
Tending to the needs of the health care provider
Caring for dying persons and their families can be a strain for the professional caregiver.� Observing unrelieved suffering is particularly difficult, and one coping strategy is to ignore the pain. Such a coping strategy is less effective than employing aggressive pain management strategies. Nearly all pain can be relieved and a great deal of suffering can be ameliorated with aggressive, multidisciplinary care planning and intervention. Coaching the patient and family to focus on living each day rather than on the losses is one effective strategy to alter suffering. Dealing with one�s own grief also is important, as described in the Grief module.
|
©2001 D.J. Wilkie & TNEEL Investigators