Introduction
John is suffering from an advanced and progressive disease, which is lung cancer, and this is the reason his general practitioner referred him to the community palliative care service where he will be able to receive holistic care. ‘Palliative’ is a Latin word derived from the word ‘pallium’ which means covering. This was coined in the middle ages when the understanding of cancer was virtually nonexistent and physicians merely treated the symptoms since the disease grow unseen. Palliative care, therefore, was loosely referred to as alleviating the suffering of the patients without really curing the ailment as Matzo, (2006) indicates. As the advancement in the nursing science takes place, palliative care has undergone developments due to the development in pharmacological interventions in the control of chronic pain and other equally distressing symptoms as MacLellan, (2006) points out.
The World Health Organization (WHO) defines palliative care as a method of caregiving that improves the quality of life of the patients suffering from life-threatening illnesses and their families, by preventing and relieving suffering through early identification and perfect evaluation and treatment of pain and other symptoms and care to their physical, psychological and spiritual wellbeing. This definition emphasizes the quality of life as compared to quantity and a view of death not as a medical disease process but as a normal life process. The National Council for Palliative Care (NCPC) UK defines palliative care as active holistic care for patients with highly developed and progressive disease where management of pain and other symptoms together with psychological, social and spiritual support are very important. This is all aimed at giving the patients and their families the best quality life throughout the disease trajectory. This definition is supported by the National Institute for Clinical Excellence (NICE) in the same country and differs from the WHO’s definition in the area of emphasis where the emphasis is on supportive care.
The concept of supportive care as explained by Berger, Shuster, & Roenn, (2007) means that the patient and his/her family are helped to cope with the disease, and the treatment begins right from pre-diagnosis, diagnosis, treatment, cure, continuing illness, death and bereavement with each stage being given equal priority. This also focuses on helping the patient and the family to live the best life possible with the effects of the disease. No matter what the definition, Old & Swagerty, (2007) says that the main aims of palliative care assert life and regard death as a normal life process instead of a medical condition, provide respite from pain and other difficult symptoms, incorporate psychological and spiritual wellbeing of the patient in palliative care, providing a support system that will see patients being as active as possible until their death and finally, providing a support system that will aid family members to cope with the course of the disease and bereavement.
John has a wife, joy, and one daughter Diane who lives with her own family in the UK and although they are in constant contact through email, he says that he misses her. Joy on the other hand says she feels useful taking care of John since she is not in employment. In palliative care, the family of the patient is very important. Payne, Seymour, & Ingleton, (2008) says that the structure and dynamics of the family, the societal influences on it, its value systems and beliefs will be a major influence on how they cope with dying and death. In the western world, families are less equipped to deal with the emotional and social demands that accompany caring for dying relatives. It is for this reason that palliative care professionals should be flexible and non-judgmental when it comes to their definition and understanding of the patient’s family and respond to situations as they occur. They need to understand who to provide support to and the kind of support they require.
Another aspect of palliative care that is very important is providing care to people to help them live until they die, it is not about bringing about premature death and it is emphasized by the WHO and NCPC definitions. It is clearly stipulated in the palliative care philosophy in a statement that reads ‘neither to hasten nor postpone death’ (Berger, Shuster, & Roenn, 2007). This is the most endangered aspect of palliative care since some countries such as the Netherlands, Switzerland, Belgium and some states in the United States have legalized medical assistance to die to terminally ill people who request it. Though this law is based on compassion for people who find themselves desperate, the euthanasia debate is still ranging in healthcare fronts and demands a sensitive and informed approach to it especially for healthcare professionals as Radbruch & Downing, (2010) clearly puts it. The moral right to provide care to patients such as John falls on the nurse and with the correct use of pharmacological interventions to control his breathlessness, cough and fatigue and his troubles sleeping at night and support to him and his family and friends, the nurse is able to respond to the cry of such patients to “help them die” as a “help me” cry (Becker, 2009).
End-of-life care
End of life care is provided in many healthcare environments which could be intensive care, emergency units, renal dialysis, neonatal units, home of the patients, community palliative service units, hospices for all kinds of patients. Palliative is different from end-of-life care systems in that palliative care focuses on providing support during the disease trajectory; this is in symptom management as well as during the suffering of a patient. In other words, it is a set of services where the illness has the potential for cure. End-of-life on the other hand means reliable, skilled and supportive care for patients whose illnesses are at an advanced and potentially fatal stage and their families and those close to them. In the case of John, his general practitioner recommended a community palliative service unit because his lung cancer has reached a fatal stage and he does not have any strategy left to cure him. John values relationships and his wife is willing to take care of him at home though she needs support from a palliative care nurse. This nurse needs to be compassionate and effectively skilled in providing end-of-life care support (Georges et al, 2008).
Strategies for ensuring quality end-of-life care
The Department of Health, (2008) outlines the strategies to ensuring quality palliative care are open communication which is conducted in an honest and timely way, maintaining comfort, effecting social support and care for the patient’s caregivers, quality application of the principles of palliative care and finally, appropriate and ethical spiritual and cultural care. According to Radbruch & Downing, (2010) effective communication in palliative care begins by giving information to the patient and family about their diagnosis, illness and treatment so that they can be able to make appropriate decisions about the care. It also moves to the health professionals involved opening discussions about end-of-life care while the patient is able to participate fully in the discussions and decision making. The palliative care nurse should also facilitate discussions between families and patients in a supportive and kind way.
Principles of palliative care
In order to provide quality care, a palliative nurse should treat John and his family and those close to him as a unit of care while including John, his wife and daughter in the decision-making process all the way. Also, John’s general practitioner and palliative nurse should give John and his family all the information they need so as to be able to make informed decisions about John’s care, the objectives of such care and the priorities which they should consider now and in the future. However, the information should be given in an incremental manner when they need it so as to avoid being overwhelmed. The nurse will play a major role in initiating discussions about end-of-life care with the patients and their families. Chronic diseases deteriorate a patient’s health, making it difficult to establish a patient’s fate. Center for Bioethics,( 2006) says that in an intensive care setting, the earliest possible chance should be taken to discuss these issues but in cases like Johns, symptoms need to be studied carefully in order to determine when this stage has reached. This is for the reason of avoiding crises occurring that would prevent patients not to participating in the planning of their care.
The discussions about end-of-life with patients and families are tricky and hard to initiate. This is where Radbruch & Downing, (2010) suggests that first nurses examine their own attitudes, values and beliefs on things surrounding death so that they can be able to communicate well with those involved and to be able to provide maximum end-of-life care. In order to help the patients and their families to make decisions regarding end of life care, the nurse should be able to speak clearly without use of euphemisms, be specific about the aims of treatment and what to expect of it, have a willingness to open and engage in the discussion and specifically use the words “death” or “dying” as opposed to other phrases to refer to the same. He/she should also speak about optimism and the goals of treatments and the weight of treatment and prognosis and further work together with other health care providers to give the patients and family consistent information (Palliative Care Australia, 2008).
The palliative nurse providing care to John should make assessments on whether John and his wife and daughter really understand the complexities of lung cancer patient care during their therapeutic sessions. He/she should be able to respond to their concerns and questions. When communication is effective and skilled decision making is done, better decisions are made, conflict is reduced, a more effective care plan is outlined, satisfaction from all concerned is achieved, fewer mistakes are made, stress is reduced and burnout is avoided. The nurse will also realize more therapeutic relationships with the family and patient (Peden et al, 2008).
Care for the family in palliative care
When a person is diagnosed with cancer, he/she undergoes various crisis moments during the course of the disease. Cancer treatment, be it curative or palliative oriented, presents many demands to both the patient and his/her family which are physical and emotional in nature. When the patient gets to the advanced stages of the disease, disabilities and intensity of symptoms increase and bring a lot of sufferings. Moreover, facing death and the anticipatory grief can be overwhelming to the family and the patient (Pereira, Watanabe, & Wolch, 2008). During this journey, the family members are also going through their own stresses and changing roles which may be arise directly or indirectly as a result of the illness. They also face more stress during grief before and after the patient’s death. These aspects make the disease a family affair and in palliative care they should also receive their supportive care.
Family members are treated as informal caregivers in palliative care since they are important aspects in upholding the wellbeing of the patients at home. Kapp, (2007) says that the wellbeing of the patients has the ability to affect that of the informal caregivers and the reverse is true. When the patients can not be able to talk for themselves, it is the caregivers that report their symptoms and make medical decisions. This means they are able to facilitate care giving or be a barrier to the process and, therefore, need to be considered.
The task of care giving and care receiving
The informal caregiver such as wife and children in case of John, provide direct care to the patient in areas such as drug administration, bathing, wound care, toileting, bathing, laundry, food preparation, assistance in mobility and emotional support among others. In addition to these tasks, caregivers have to deal and cope with their own emotions, resolving uncertainties, struggling with acceptance and balancing for the personal time. Further, the care giver such as John’s wife, Joy, has to deal with the healthcare providers, meet the needs of the family, manage whatever finance they have and interact with other people such as those who come to wish John well. These are not small tasks and one study conducted on informal caregivers of patients suffering from advanced cancer in Hong Kong shows that psychological distress is what weighs them more than physical distress (Wettenhall, Lee, Louise, & Recoche, 2010). In another exploratory study on 21 informal caregivers, 20 of them said they have difficulties in providing care and outlined the relationship with the patient as the most common distress factor followed by emotional reactions to caring and then physical demands in care provision and finally restriction in social life. In this study, all caregivers retaliated that support from nurses as the most useful coping mechanism (Tse, 2007).
A palliative nurse should care for the family by first assessing the family as a unit in order to determine the best interventions to use. The nurse should evaluate the individuals involved, and the kind of relationships that exist in that particular family system. The second step is to develop interventions that will offset the established influences that are upsetting the balance of the family system as a result of the disease. Here the nurse needs to communicate effectively with the family members to gauge their understanding of how death or dying is going to affect them, and the relationships they have with each other and the patient. From this assessment, the nurse is able to draw an intervention plan that meets the need of every member of the family (Coppa, 2006). Matzo, (2006) says that when asked, the family members and caregivers will indentify the wellbeing of the patient or loved one as their number one concern, but nurses should help them identify their own needs.
The palliative nurse should pay visits to the families in their homes and in various settings in the process of assessment. They should adjust their perspective from the patient alone and focus to him as a function in a system, and how various components of this system relate. In doing this, nurses should be prepared for some resistance from the caregivers as Becker, (2009) retaliates a point made above by Matzo, (2006) that the family do not see their needs as important and refuse to dwell on them. The nurse here should assure them that their loved’s needs are being addressed, and in order to do this efficiently, their health and well being is equally important in adressing. While doing this, the nurse should ask the family members to identify their goals, expectations and preferences and what they consinder critical to them. From the outcome of this, the nurse is able to outline measurable goals and objectives and the suitable interventions for reaching them (Wenrich, Curtis, & Shannon, 2008).
Things to do in family assessment
Assessing the patient’s family structure is the first thing to do for a palliative care nurse. In a family like John’s, the nurse should outline people identified by John as family members including informal family such as friends, coworkers, neighbours or church members who provide care and support of any kind. Details such as their age, sex, names should be included. In addition, their roles should be outlined through interviews or observations over time. It is important here for the nurse to identify how John’s family functioned before his illness in order to identify the fitting interventions (Towers, MacDonald, & Wallace, 2009).
Assessing the roles and expectations of the family in the care for the patient is the second part. These will change over time as care process is given and is influenced by the abilities and experiences. The nurse will play a major role here in educating and supporting the members who want to paly a role in caring for the patient, or one who feels unprepared to offer any care or even one who wants to find out what he/she can help in palliative care. Historical and long standing roles and relationships such as that of John feeling uselss because he is the authority figure in the family and can not be able to take care of himself or his wife, can bring problems. The nurse should be there to help the patient and his family to adjust to the “role reversals” in a more positive manner by reframing this in such a manner that John’s wife feels happy because she can do something for him after all the years he had cared for her. Being an elderly couple, John and his wife may not have many family members whether bilogical family or informal family such as coworkers, since at their age, their friends may be themselves having health problems or not energetic enough or even have limited resources. In this, Joy his wife may have a lot to do on his own that she be overwhelmed since her only child lives far away with her family and may not be able to do much. In this case, the nurse should explore other types of “family” such as Paid caregivers, religious affliliations, social groups as Fallon, Hanks, & Hanks, (2006) says.
A SWOT analysis is another thing that a palliative nurse should look into while assessing a family and the environment itself, this is for the rason that they may enhance or jeopardize the palliative care process (Berger, Shuster, & Roenn, Lippincott Williams & Wilkins). In case of John and his family, the opportunities range from a grown daughter who can provide financial support or a community palliatuive facility that offers family centered services for the terminally ill. The weakness include the fact that Joy is all alone to take care of John and the fact that the dughte lives very far while threates may include lack of coverage in medicare for palliative care. The major strenghth in this case is that Joy is still strong and healthy to take care of her husband.
Knowledge deficit in regard to palliative care is an aspect of care that the nurse should assess. After the comfort and care of the patient, the nurse should not address the issue of adequate information to the family members during the disease process and when the family needs to know what information (Purtilo, Have, & Cassel, 2010). In case of John, the disease is not sudden, what maybe sudden is requring end of life care. The nurse should not, therefore, focus on the disease process in planning for care, rather should at this point focus on goals of the patient and his family. Having direct conversation with John and his wife and possibly his daughter and those in their support is very vital. This discusssion should be clear and honest and at the same time theraputic. She should make it clear to them that having this discussion is very important and will serve as the beginning of care. She can also request Joy and john whom they want to be present such as their daughter, cahplain, social worker or a close friend. Asking about past experiences about death and terminal illnesses may serve as the beginning so that the nurse can be able to assess the reactions, and what they might want done differently in their close case with death and terminall illness (Fenstemacher & Winn, 2010).
Common myths about palliative care
In order to provide a holistic care for John and his family to achieve optimal quality of life, the nurse should deal with the common myths that exist about cancer. One such myth according to Missailidis, (2007) is that people dying from cancer experience great pain. This has been there for a long time but now with advances in cancer understanding; about cancer pain and its management, it has been left just as a myth. John and his family maybe harboring such fears and the palliative nurse have to explore such fears during her assessments and educate them about it. Another myth that may affect the care that John and his family receive is about palliative care being for provision of comfort when a person is dying. Though the comfort of the patient is taken care of, there is much more in palliative care than just comfort. Active treatment of symptoms and prevention of new ones from arising is done through symptom management, but these are given so the patient can have evocative and valuable experiences, self actualization and spiritual growth according to Fenstemacher & Winn, (2010). All sources of suffering whether they physical, emotional, social or spiritual are addressed in palliative care. Lastly, the nurse should act to dispel the myth that palliative care is given only when someone is dying. Palliative care starts during the time of diagnosis or when an acute stage of a terminal illness is discovered. This care goes on during the disease course and continues even after the patient has died to support the family during bereavement (Peden, Grantham, & Paquin, 2008).
Conclusion
With John’s cancer having reached a fatal stage, the doctor refers him to community palliative services. This means a place where he will receive holistic care for him and his family so that they can realize a quality optimal life. This way John and his family will receive support from healthcare professionals and particularly a palliative nursing, live the best possible life with the effects of the disease. His family here means his wife Joy and daughter Diane and other informal family members who are active in the support care, as they will be identified by john and from the nurse’s assessment. It is important for the nurse to understand that, it is their duty to assert life until the patient dies and to make John and his family understand that death is a normal part of life as opposed to a medical condition. In providing supportive care to John, communication is very important which must be done in a clear, honest, open and therapeutic way. Assessment of the family’s structure, roles and expectations, information gaps and drawing a SWOT analysis will help the nurse to come up with an effective care plan for this family. It is important that she discusses right away the myths and fears that these members harbor about palliative care also.
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