Quality of life has a different meaning for everyone. Many personal thoughts and feelings can come into play when caring for others during the end stages of life. However as a nurse and caregiver, these opinions must be put aside at this significant time. For some health care providers, we may feel that keeping the patient comfortable and having them surrounded by family is most important. However, for the patient, personal culture, lifestyle and value for one self as well as a sense of independence in handling this time alone is most imperative. Therefor a nurse must consider the individual’s past experiences, present lifestyle and personal hopes in which they choose to live in relation to their goals, expectations, standards and concerns at this stage.
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One must meet not only the physical needs of the patient but the psychosocial demands in this sensitive time of need. Seeking aggressive medical treatment vs. palliative care is something that is very personal and differs from individual to individual. Nurses’ opinions and suggestions of the “best care” should not be voiced to the patient or family, even if asked directly. For Mrs. Thomas, time also plays an important role. She is young and may have many other worries than those of an older age experience in preparing for end of life. A nurse must consider what areas of life are important to her and what is the relative importance of each of these areas. Personal perception that counting on family support is huge, but may not be possible in Mrs. Thomas’ situation as her children live out of town.
STRATEGIES TO IMPROVE QUALITY OF LIFE
The nurse should look at several strategies that directly impact the patient as well as the family. Quality of life not only looks at the health status the patient but those directly involved in the care of the patient. This encompasses a broader set of planning including finances, housing, and employment. This will have a direct impact on the entire family.
Three important strategies that are helpful to relieve overall stress and promote optimal coping skills include: 1) patient awareness of disease process, 2) available support from healthcare providers and 3) addressing physical as well as the psychosocial needs of the patient. Healthcare professionals must be prepared and speak directly with the patient and family when it is determined best to the physician’s ability, that the identified disease of breast cancer will cause death. Advance planning and preparation may be helpful in dying well if Mrs. Thomas is more aware about her status of disease. Physicians and nurses must change the plan of aggressive medical treatments of curing the disease of breast cancer and concentrate providing support and a comfortable well being of the deteriorating disease process. This in turn should provide a plan of care for relief of pain, contentment to the patient and focus on the overall whole being of quality of life.
The homecare team can include doctors, nurses, home health aides, social workers, and clergy as well as trained volunteers. Most team members provide on-call 24 hours a day, 7 days a week to deliver support. The patient and family should feel the comfort in calling these resources at anytime. The nurse must remind Mrs. Thomas and her husband that they are not “bothering” any team member by asking for assistance.
The team must always work together and communicate the patient’s goals for end-of-life care. It is important for all to realize this is very individualized for each patient and family member. Each individual strategy should include caring for the whole person physically, emotionally, socially and spiritually. It important for the team to develop strengths based perspectives of psychosocial interventions and listen to what the patient and family have to say to enable them to cope better. In doing so, the team must also communicate on each encounter with Mrs. Thomas and family as well as each other to assure that her and the husband’s needs are being met.
A holistic nursing care plan in valuable in delivering care to the entire person in supporting the physical, mental, spiritual, emotional, social and environmental needs. With this approach, nursing care needs to move away from viewing Mrs. Thomas as merely a ‘diagnosis’ and treating her as a whole person. Nursing goals should be to develop immediate trust with the patient and family, provide comfort, supportive care, and symptom management. This can be achieved by effective communication and providing a calm, relaxed setting for Mrs. Thomas.
Allowing her to speak openly and honestly about her feelings and emotions of grief, physical complaints such as pain, nausea, and difficulty sleeping is a good way to start to develop a trusting nurse/patient relationship. As a nurse, one must be supportive and be willing to listen openly. Once Mrs. Thomas begins to express these types of things, the nurse must review and evaluate every visit to improve specific concerns with her. More importantly, healthcare providers must display an openness to hear new concerns and prioritize the needs of the patient and family.
Assessments to maintain the self functional ability for Mrs. Thomas should include creating a plan to achieve realistic goals and allow self care as long as possible. This in turn can give control back to Mrs. Thomas, help raise confidence and value her quality of life. Mrs. Thomas’ physical, social and environmental conditions should also be considered to help her care for herself. Discussing the 24/7 availability of visits from registered nurses and social workers, involving family and friends or volunteers that can help with running errands and meal preparation for adequate dietary intake, and discussing appropriate medical equipment to assist with ADLs such as performing personal hygiene can prove to be helpful.
PROVIDING ADDITIONAL CARE
When self-care is no longer possible, the importance of more frequent nurse and/or social worker visits, and interaction of clergy is valuable. In addition, further involvement of additional family, friends, home health aides or volunteers to assist not only with running errands, meal preparation and assistance with ADLs but being present in the home for longer periods to care directly for Mrs. Thomas becomes more imperative. The nurse can assist in making sure appropriate DME equipment is in the home. In addition, this turns out to be a time when additional emotional support is of great concern for Mr. Thomas.
Mr. Thomas already suffers from chronic depression and now has to endure immense and continuous stress to care for his wife with advanced breast cancer. Over time this takes a toll his health, ability to work, finances, and their own personal and family needs. Involvement of not only the nurse, but also social worker and bereavement counselor can help Mr. Thomas tremendously. Encouraging him to take his medications will help both him and his wife. Also, reassurance that it is okay to want quiet time and allowing others to help to care for his wife should be verbalized to him in a caring manner.
Taking some of the financial worries away from Mr. Thomas may help as well. The social worker can discuss resources that are of no cost from community volunteer organizations and review the reimbursement of covered services from the insurance organization at the beginning and in ongoing care of his wife. Sharing the right information with the patient’s family is very important and can assist in better coping. Again, the home care team must offer an environment that provides the openness to hear all concerns and overall needs of not only the patient but also her family.