University of Chicago
Type of paper: Thesis/Dissertation Chapter
End of Life Care: Family Health
In nursing, the goal of care is usually to restore the patient back to the highest level of health possible. In some cases, however, the goals of care change when a curative approach is no longer appropriate. The new goals of care could simply be palliation and pain control rather than a restoration back to full health. This type of care is called palliative care. Palliative care is not the same as end-of-life care, but the two go hand-in-hand at times. The goal of end-of-life care is a “good” death, good being defined by the patient. Palliation is part of that “good” death. Both palliative care and end-of-life care are areas of patient care that can be highly sensitive for those involved. A nurse must be able to navigate these waters carefully. The physically and mentally exhaustive nature of illness and dying takes a huge toll on the patient and his/her family. Anyone can qualify for palliative or end-of-life care regardless of race, gender, age, or any other demographic factors. It simply depends on the disease-state, the recommendations of the health care providers, and the goals of the patient.
It is estimated that 69%-82% of those who die in high income countries such as the United States will need palliative care (Murtagh, Bausewein, Verne, Groeneveld, Kaloki, & Higginson, 2013), illustrating the need for nurses to familiarize themselves with this type of care. One concern voiced by many nurses is a not knowing what to do or say during end-of-life care (Sherwen, 2014). In the case of cancer, in particular, which has become more of a long-term illness, nurses feel uncomfortable and may miss opportunities in patient care (Sherwen, 2014). The following will be a discussion of palliative/end-of-life care and what the nurse can do to help the family and patient during a difficult time. A successful case is one in which the patient and his/her family feel supported and listened to throughout the whole process and the goals of the patient are achieved. Discussion
When does palliative care begin? When does end-of-life care begin? These are questions that can only be answered by the individual going through the disease process and the team of caregivers advising him/her. A simple answer to both questions would be this: when the goals of care change from full restoration to health to comfort, relief of symptoms, and maintaining as high a quality of life as possible given the disease-state. Palliative care has a broader definition in that it focuses mainly on the patient’s comfort and can be applied to many other cases besides the imminently dying patient. The original development of palliative care was primarily for patients with cancer, in which there may not be a cure, but symptom management and prevention of progression of the disease is the primary goal (Kaakinen, Coehlo, Steele, Tabacco, & Hanson, 2015, p. 278).
It has since branched out to other illnesses with poor prognosis but long disease-course; it really depends on the care team and the individual as to when it is implemented. End-of-life care, on the other hand, is a series of decisions made by the family when death is imminent (projected in the next days to months). They must decide how much medical intervention they want done with their family member, where the “ideal” death would occur (in their home vs. in a facility), and what their definition of a “good” death would be. Every case is different and there is not always time to plan everything, but this is a general outline.
Before approaching any new area of nursing, a nurse must assess his/her own personal beliefs and for the presence of any biases about death and illness. It may be that the nurse has never encountered death and dying face-to-face and may hold pre-conceived notions that may not be in harmony with the patient’s beliefs. Identifying these biases and correcting them is crucial to taking care of the patient. While it is not wise or possible to separate one’s own person from one’ person as a nurse, it is better to find ways to help the patient through the process without burdening them with your own beliefs.
Dying is a process that involves the entire family; that is to say, the family that is defined by the person. The nurse must be aware that this is not only an individual process but a family process. This involves recognizing family dynamics and communication patterns and facilitating healthy interactions.
Kaakinen et al (2015) discusses the two types of health care teams that will be involved in the patient’s care: multiprofessional and interprofessional. The multiprofessional model is an older model that does not focus on holistic care. Care is fragmented with an autocratic leader, vertical communication, separate goals of the professionals involved, and families are peripheral to the process (Kaakinen et al., 2015). The preferred model is the interprofessional model emphasizing a team approach, holistic care of the patient, horizontal communication, and involvement of the family (Kaakinen et al., 2015). The nurse should keep this collaborative approach in mind when dealing with any patient case, involving all teams associated with the patient for the best outcome.
It is important to remember that care of the patient does not end when the patient dies. After the death there is still work to be done in the form of comforting the bereaved family members. It has been reported that some families feel “abandoned” after the death of a loved one by the hospital staff and this simply should not be so (Kaakinen et al., 2015). The nurse’s role after death involves simply a comforting presence, providing resources, answering questions, and listening to concerns. It may also be helpful to give the family information about what to expect next, what information is needed from them (funeral home arrangements, organ donation, etc.), and provide a place for them to rest and process.
The relationship the nurse has with the patient is integral to positive patient outcomes. Ways that a nurse can improve this relationship include being professional, being sensitive, listening, and establishing trust. The nurse needs to be able to communicate and be communicated with clearly and easily. This will be a challenge for some families who already have poor communication skills. Asking questions and taking time to listen go a long way in opening up communication.
It is of benefit to the nurse to try and center his/her thinking on what the dying patient’s goals are. A dying person wants to feel some semblance of control, strengthen personal relationships, and be relieved of pain and suffering. Good end-of-life care involves finding these goals, describing to the patient what good end-of-life care might look like, talk about symptoms that may occur, and discuss the importance of good communication, good relationships, and the role of informal (family) caregivers (Sherwen, 2014, p. 51).
When palliative care and end-of-life care are the direction care is taking, the nurse needs to shift gears in a positive way. One positive step the nurse can take is to empower the family during this time. Many families feel helpless against the diagnosis, but the nurse can show them that they still have an element of control. The nurse should provide them with information about the disease process, give the family resources in the community for support and services, and most of all offer encouragement. There will be negative feelings present in most cases, including feelings of hopelessness, depression, anxiety, and loss of control. The nurse must recognize these negative feelings and start a conversation. The nurse needs to be a facilitator of conversation between family members in order to identify common goals. Family meetings are a great tool to utilize throughout. It is held between caregivers and leaders in the family and can reveal concerns, answer questions, and establish goals of care.
Parts of positively dealing with a dying loved one include balancing hope and preparing for death, as well as finding meaning in the situation (Kaakinen et al., 2015). These are things that may be beyond the scope of the nurse’s practice, but identifying them is important. The nurse can bring in social work, the palliative care team, and pastoral care to assist the family; whatever is appropriate.
When the time comes for the actual death of the patient, there are clinical signs and symptoms that the nurse must recognize. Care at the time of active dying is crucial for a good death. Some symptoms such as sleeping, decreased hydration and food needs may be easy for the family to bear, but others, such as restlessness, difficulty breathing, and confusion may be very difficult to bear (Kaakinen et al., 2015). The nurse and care team must work together to provide maximum comfort for the patient as well as emotional support for the family during this difficult time. Conclusion
In conclusion, there is a point in a patient’s care where the focus shifts from curative to palliative, often in the case of cancers but in some other cases as well. The nurse needs to familiarize his/herself with this topic in order to provide optimal care. He/she must assess his/her beliefs and biases on the topic and address those that may be a source of conflict. The goals of the patient and his/her family must be established. Family meetings and conversations need to occur to facilitate communication, address concerns, and provide information. The nurse plays an important role in providing information for the family, managing negative feelings, encouraging hope, and preparing for the death. At the end-of-life and after the actual death the nurse can provide compassionate care, display sensitivity, and comfort the bereaved.
Death is the inevitable outcome of this life that all must face and a nurse has a special opportunity to help a family through the process. Helping and comforting a family during this process can be a truly rewarding aspect of a nurse’s career.
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