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Grief, Loss, and Suffering at end of Life: Masters in Palliative Care

Introduction

In the world today millions of people are suffering from severe and complex diseases that are terminal or chronic in nature. The aftermath of these diseases is normally pain, distress, suffering, early death and grief to the people affected. Some of these diseases are “cancer that is chronic, terminal ailments, progressive pulmonary disorders, fetal heart failure, AIDS, and to some extent progressive neurological conditions”. (Jones, 2002) These conditions have become wide spread of late affecting mainly the young and elderly persons bringing about grief, loss and suffering at end of life. Diseases of this nature have triggered measures to be put in place for care giving and comforting purposes. The measures for curbing these situations are in the employment of hospice and palliative care for the people suffering from these ailments together with their families.

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Palliative care is “any kind of care that lessens symptoms improves the quality of life of an ailing individual together with his/her family and provides physical, psychological and professional support.” (Eagan &Labyak 2001) On the other hand “hospice care is a kind of care that centers upon palliating symptoms in critically ill individuals.” (Eagan & Labyak 2001) Hospice care again “includes palliative care for the incurably ill given in institutions such as hospitals or nursing homes but also care provided to those who would rather die in their own homes” (Worden, 2002)

Nurses are highly recommended to carry out palliative and hospice care. This is because they are professionally trained to handle such situations; they can offer better care giving services needed in the day to day activities of the patients and to some extend offer psychological support. The issue of employing nurses is again supported by the American Association of Colleges of Nursing (1998) in their recommended competencies and curricular guidelines for end of life nursing care. Competency #11 states that nurses are to “Assist the patient, family and colleagues to cope with suffering, grief, loss, and bereavement in end of life care.” Therefore this paper will be focusing on loss of life, suffering, grief and bereavement experienced by families, patients and care givers at end of life. The paper will discuss on the type of care to be administered in these situations (Palliative & hospice care), talk about two cases studied and finally conclude by showing how to effectively deal with this issue.

Palliative Care

Palliative care in the home environment is gaining attention due to the high quality of services it provides as well as the costs and efforts with regard to the personnel it requires. Current research in this area is focusing on various drugs, devices, ethical and moral issues related to death and dying. This is an evidence of a constant effort to improve the quality of care in the palliative home care setting.

In the past, “the most common method of caring for dying patients was to admit them to a hospital or nursing home. While this method may have relieved some burden of family members and care givers, patients may not have been satisfied (Jacobson, 1998). Most patients at end of life would prefer to be surrounded by familiarity and with family members. Therefore, it is not surprising that many of them ask for home palliative care. In many cases, living at home until end of life is possible, and therefore home palliative care does take place.

Another reason why palliative care has become important especially in the American health care system is that, many Americans die of chronic and terminal diseases. The cost of medical care for these patients has increased considerably when care is to be provided in a hospital. Therefore, palliative caring at this stage becomes essential (Blakemore, 1998).

There has been a lack of development in the palliative care sector in the medical field. In the past, policy makers did not consider it as an important subject. However, with the aging baby boomer population and the increase in life expectancies, palliative care is becoming a large and important part of medical care. Mostly, chronic complications begin at around the age of forty prompting this kind of care which continues until death of the patient. The question in this regard is how well the American health care system is equipped to provide health care to older generations and what arrangements it has made to serve the increasing aging population.

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Palliative care is very different from routine care provided to patients either in hospitals or at home within the traditional home care environment. The codes that acknowledge the responsibilities of palliative care differ considerably from other routine methods. For example, it is of utmost importance to consider not only the patient, but also the family members and the caregivers. This kind of setting addresses the family problems and needs as adequately as the needs of the patient. Therefore, coping therapies, counseling and bereavement becomes a fundamental part of the total care exercise (Mathews, 2002). Patient autonomy and confidentiality must also be maintained; consequently a thorough evaluation of the patient from all aspects must be carried out and taken care of accordingly. This encompasses physical, mentally, spiritually and ethically needs.

End Stages of Life and Palliative Hospice Care

The patients in the end stages of life may require more understanding and humane communication, therefore, relevant people should be ready to provide the necessary attention and devotion. As noted by Peschel (1997) “suggested domains for measuring quality at end of life should include the patient and family satisfaction, family burden, including financial and emotional burden”. Finally, any symptom that the patient has must be addressed immediately and professionally. A team approach and proper planning towards a patients welfare helps in avoiding confusion and coordinates better outcomes. (Faull, Cater & Daniels, 2005)

In most cases predicting the stages at end of life are not difficult, as almost all follow a similar pattern with some variability. Cancer patients usually show a decline that may range from weeks to months. While these declines may be predicted, the lack of reserve due to multiple organ failure is indicative of an unpredictable time of death. The type of disease and its progression is very indicative of the time it will take for the person to die (Strang, 2004). The severity of the condition also dictates the length of stay and how it will affect the family members or care givers. Hospice has become a larger sector of palliative care, and this can include a variety of settings. Hospice may be the home of the patient, an assisted living facility, long term care facility, or a hospice residence of some kind (Radulovic & Person, 2004). This concept was embraced when doctors came to realize that in the end stages of life, patients preferred to be at home instead of a hospital setting. There are genuine reasons for such wishes, for example a hospital makes the patient feel more vulnerable and depressed. Being in comfortable surroundings helps the patient to cope better with the inevitable.

In this kind of setting caregivers are often given the tremendous task of caring for a patient who is nearing death. Even if this is individual effort, a team effort is highly recommended in providing a good care at this dying stage. Palliative care is related to a lot of concerns; one of them is medical care, where the patient must be given relief from various pain and anxiety issues. Another one is the moral and ethical principles that require attention throughout the processes. Clinicians highlight the basic concerns in this care to be, “preventing and treating pain and other symptoms, supporting the family or those who are caring for the patients, ensuring continuity, making informed decisions, attending to emotional well being which may include ethical, religious and spiritual areas and sustaining functions”. (Lorenz, 2008)

While medical care is an essential tool for the care of dying patients, many of these patients undergo depression. The five stages of dying, and depression is another important element in the palliative care of the patient. Non pharmacological therapies usually involve individual and group therapies for the patients as well as their families. These include, “Education, cognitive and non cognitive group behavior therapy, informational interventions and individual and group support” (Lorenz, 2008).

Hospice care in this regard is considered a very good option for those who are aware of their terminal conditions and do not wish to receive any more treatments. Hospice care at home may in fact help reduce the degree of depression, because the patient is in his/her own comfort zone. This care helps patients feel somewhat in control of their situation. Other interventions are also being incorporated in this care to improve outcomes by decreasing complications and death approaches. Involving all stakeholders has also shown to increase outcomes and improve end of life care (Lovell, & Cordeaux, 1998).

Trends in Palliative Care

In the past, family and care givers were kept at bay when medical care was being administered. This resulted in increased complications and early death. The care givers and family members felt cut off, in the event medical personnel were suddenly without information about the mental state or psychological aspect of the patient. In short, the physician focused on the patient, leaving behind the family which could help in improving the outcomes. Such methods in the past were considered professional, but now they are being questioned. Currently the medical personnel are realizing the importance of family, the ethical and ethnical variations and the need of the patient’s psychological needs in the complete palliative care. The palliative care team believes in order to improve outcomes and avoid any confusion; the family or relevant persons must be involved in the end of life plan. It is said that among the many trends that may have taken place in palliative care, perhaps the most significant one was the inclusion of family in the various decision making process of the patient. (Lorenz, 2008)

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With clearer understanding about the needs of dying patients, home based palliative care systems are now increasing to address this issue. There are now specific practices and protocols being developed to standardize the provision of palliative care in the home environment. The utilization of nurses in the provision of care is also paramount.

It is again important to understand the hospice concept from the patient’s point of view. Patients during their final days wish to spend their last moments at home and die there. In this regard, the role of the primary care setting is important in providing the patients with their wish. This is however not an easy task to conduct, as caring in the home is far more difficult than giving care in a hospital. The care takers or family members may possibly be unprofessional and therefore, may not understand the importance of various signs and symptoms of the patient. (Faull, Cater & Daniels, 2005)

Among the various factors that encourage the patients to prefer hospice care include being close to the family and other care givers, adequate nursing care and familiar surroundings. The disadvantages of hospice care to the family may be disruption of normal activities, financial strains, and providing intensive support multiple times a day. (Faull, Cater & Daniels, 2005) Home based palliative care program is a very ethical method of providing adequate care while respecting the patient’s wishes though. Such programs are useful in reducing costs, because emergency care and hospitalization are considerably reduced. With rising costs of health care, home based palliative care programs are very good options for near death patients. (Brumley, 2002)

Development of the Hospice System

During the last 30 years, there have been a lot of efforts placed on increasing awareness among the public on the hospice option. The increased support in various forms led to its evolution and growth. Not only has the number increased in current hospice settings, but the organizational complexity has also been achieved. Now there are many palliative care service providers. With the improvements in the care provided, many patients prefer to remain at home with hospice care (Seymour, 2004).

Introduction of Palliative Care and its Advantages

Currently individuals are shifting from hospital based care to home based palliative care program. These program aims to integrate palliative care earlier than did previous programs. Attempts to blend these two different fields and kinds of care are often difficult and therefore, training of professionals to ensure a smooth transition is important. Again the benefit of such a program is twofold. It helps the patients remain with their primary physician, which many patients prefer, while getting regular visits from the palliative care team and physician. (Brumley, 2002) Contrary to the initial methods of care, where the patient was not included in the decision making process, the current programs aim to support the patients by making them active participants in various interventions and actions that take place.

Programs such as ours are very flexible intended to help ease the difficulties encountered in palliative care, including the medico legal ones. The program has very flexible guidelines, and helps to include even those patients who may have less or more than six months to live. The program also supports and encourages curative care alongside palliative care.

The program follows five main rules in carrying out palliative care. It works by a team effort, which is responsible to constantly monitor various needs of the patients, and monitors various signs and symptoms. The team conducts numerous home visits, which provide nursing, personal care, support and education to the patients and care givers. Ongoing care management and telephone support is given around the clock to improve outcomes. The program is aimed at encouraging patients into accepting hospice care instead of hospitalization. The program also helps the patient in staying at home in the final days of life. This program has resulted in higher patient satisfaction, with many patients dying at home rather than in the hospital. The other advantage is in its cost effectiveness. The program has considerably reduced the number of emergency room and hospital visits as well as costs for specialized and professional care. The only cost factor is an increase in the number of team visits to the home.

Conclusion

Current increases in the number of older patients and the aging baby boomer population requires a comprehensive care program for the provision of palliative care. As much as they are destined to death, it is important to note that life of these patients does not stop abruptly. In this regard the introduction of hospice is important as well as a prudent and cost saving option. This care makes sure the patient is allocated a care giver who will call the doctor when; the patient experiences a lot of pain, “when he/she is having difficulties breathing, has difficulty passing urine or is constipated, is depressed and wants to harm him/herself, when he/she will not take the medications prescribed and when the caregiver does not know how to handle a situation” (Whiteman, 2000).

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Therefore, as shown in this paper, improvements in the service provision as well as in the making of policies can help improve the outcomes for the dying patients. Hospices can become the centers for palliative care and therefore more expertise and concentration is required to make them better places for care. Hospice care also makes it possible for families and caregivers of these patients to ensure that there is an efficient pain and depression management, there is enough discussions regarding the aftermath of the illness, the patient’s wishes are honored, all decisions made are in the favor of the patient and lastly the family makes sure that all important goals are completed (Green, 2003). When this is done the patient and the family at large would not feel the harsh effects of grief, loss, suffering and end of life.

SWOT Analyisis of Nicholas

A personal analysis of a patient is very difficult because of strong factors of judgment, empathy, routine, societal perception, as well as individual and psychological aspects. Therefore, the analysis can be carried out from both the patient’s perspective as well as the medical management perspective.

Strengths

The strength of this case may be taken in the form of experiences that Nicholas had. A positive experience reduces tension, and fears that many patients experience and may even help in their compliance. When it become evident that Nicholas was deteriorating he was admitted to the hospice program where he had already established a good relationship with the team. Nicholas received a great deal of support and love from his mom, sisters and the extended family as well as a faith community. His physician from the cancer centre where he was treated called on a weekly basis and made sure she was available to both the patient’s mom as well as the hospice staff. At times when Nicholas felt well, his family took advantage of this allowing him to attend Camp Hole in the Wall. This gave him an opportunity to interact with other children.

The provision of nursing and social services in the initial stages of treatment was a good plan to help the family adjust to various stages that lay ahead of them. During this stage helping the patient stay at home with his family was good for everybody’s mental and psychological state. Through social support, the family was taken care of by being given the necessary guidance and help regarding the patients care and mental preparations for the impending death.

Weaknesses

From the patient’s perspective, the situation did not work well. Discharge from hospice was something to be happy about, but the readmission and continued decline of the patients’ state pointed out the physical inability of the body to respond to the cancer treatments. Such slow decline in the patient’s condition often causes anxiety and depression as well as fear, especially in a pediatric patient such as Nicholas. Nicholas presented his fear especially of being isolated, secluded, and the fear of being alone.

Another weakness identified is the support system which had provided Nick with his emotional and psychological needs all through his illness was not part of his end of life care. Nick lived a distance from the large cancer centre and essentially all communication, except with his primary treating oncologist ceased. The psychological support that Nick and his family had received from the empathetic and understanding physicians and nurses as well as social workers at the treatment centre stopped. Children as well as adults have a difficult time understanding the changes taking place around them, which may also cause fear, and decreased confidence. Nicholas and his family received their end of life care from a dedicated skilled hospice team but clearly all were aware that this meant the future looked bleak.

The gradual decline in his physical condition meant more reliance on others and realization of the fact that death was near. This proved to be fearsome for this nine year old boy and his family. Nicks mom continued to work and care for his sisters which meant that she was out of the house for extended periods of time each day. His grandparents provided supervision and some care to him but it was clear that nick wanted his mom to be always present. The whole issue of Nick’s care was difficult to come to terms with. Nick’s family needed him home but they also had other responsibilities which prevented them from being together as a family at all times. Nick’s sisters were fearful and began spending time around his frail declining body. The hospice social worker and bereavement counselor spent significant amounts of time each week discussing the girls fears and helping them develop coping mechanisms.

Opportunities

Strategies should be explored and developed to consider separate funding for the care of pediatric hospice patients that would be designed in a way to provide 24 hour care and supervision that some of these patients and families so desperately need. Various programs have been introduced in recent years that promote the palliative care of children and are trying to rid the various loop holes in the US Health care system. Among these is the introduction of the Essential Care Program or ECP. This program has been at work since 1988 and is providing in house care along side of hospice care. As in the case of Nicholas the initial decision of the family to have him receive care at home was efficient. The ECP tries to provide just that to families in order to minimize the anxiety associated with admission to hospital. This program includes among other things, counseling and various kinds of support for both the patient and the family. (Field and Behrman, 2003)

Threats

The biggest threat to the palliative care system is the lack of care providers relevant to the field. Many of the providers in this area are general health care providers. There is also lack of understanding on how palliative care is different from normal medical care. The doctors and nurses may have to put more time and energy, not only from the medical and professional aspect but also to the human side of their nature of duty, which is the prime need of the patient. The lack of health care specialists in this area is therefore the biggest threat that exists. With increased trends towards palliative care the need for such individuals is greater. Another big threat that causes complications for many palliative care patients is the “six month until death regulation.” (Field & Behrman, 2003) The waiver of this policy is essential to improve the quality of palliative care. However the replacement of the regulation was based on the anticipation that palliative care is more expensive than normal programs that are used for children with life threatening conditions.

Case Number 2: Joe

Strengths

Hospice care programs are especially ideal for cases such as Joe’s, whose family members may not be able to provide required care at all times. In his debilitating state, Joe required constant care. With physical limitations Joe received the help he required from trained nurses, social workers, chaplains as well as volunteers. He received the equipment required, drugs for symptoms management as well as the home health personal care and homemaking aid. Various therapies such as respiratory, physical and occupational were also administered. With patients like Joe who are isolated for most of the day, anxiety levels are increased considerably. In such cases, they should not be left alone for long periods of time. The kind of care that Joe received was important as it reduced his anxiety. Joe also complained about lack of motor coordination, which meant that for his daily tasks such as eating and bathing he needed help. Family members were not able to provide that kind of assistance in this case therefore; the hospice care was a good option for Joe. Hospice care allows for patients such as Joe to be maintained in their own home, surrounded by people and things that mean most to them.

Weakness

Joe had difficulties in expressing himself orally which proved to be a big weakness. Joe would have benefitted from 24 hour care supervision but his wife worked therefore she was away most of the time. Although the hospice staff, including several volunteers, provided a great deal of care and supervision to Joe, the staff felt more supervision was required. Joe was declining physically and his ability to provide any self care changed considerably. He was also at risk when alone as he would not have been able to leave the home on his own in an emergency. While the staff worked very hard to maintain Joe’s autonomy, the evaluation from both a physical and psychological standpoint had to be closely evaluated and taken care of accordingly.

Opportunities

There is an opportunity to better organize in more formalized ways, how care is coordinated with various organizations throughout the country. Through better coordination of care perhaps we could start to get a grip on hospice associated with healthcare. Creating partnerships in care through collaboration and cooperative efforts we effectively address and assess local needs which could lead to a more comprehensive approach. Patients with motor decline are in more need of constant care since they are unable to fend for themselves. An inpatient setting therefore would be an ideal situation where nurses and other health care providers are present to provide round the clock comfort and care to patients. Hospice inpatient should be encouraged to provide long term care as an ethical manner of care provision. By giving the field of palliative care autonomy, palliative and hospice care can work according to what I seen as fit for the provision of good cost effective and ethically fulfilling option over expensive hospital stays and admissions. (Cassel & Demel, 2001)

Threats

The limited reimbursement provided for home hospice appears to be the greatest threat for this kind of care. The lack of funding in this sector is also a major problem. Other threats include the loss of key personnel, retention of key staff, limited resources and lack of funding and availability of 24 hour care (Portnoy & Bruera, 2001). Another problematic issue is the lack of health care providers for palliative care. Introduction of many acts related to palliative care is also increasing the complexity of these issues.

Planning for educational inclusion in palliative care programs

Palliative care programs could be enhanced by formal education programs during orientation periods as well as ongoing scheduled educational requirements. These would include “establishing continuous quality improvement committees responsible for end of life care, collecting data as a catalyst for change, reviewing existing outcome measures and data sources and experimenting with new ones.” (Field and Behrman, 2003)

Recent studies have shown that there are certain areas which patients and families feel are important to address when administering palliative care. In each case, the patient needs to be treated with dignity, demands honesty, confidentiality and appreciates being treated as a person rather than a patient. The sense of self respect increases as the patient nears death and therefore, providing the patient with such is a very positive influence during this crucial time. (Field and Behrman, 2003)

Critically ill patients are in more need of physical comfort than any other patient. In palliative care, the provision of this particular need to the patient is basic and all else is secondary. The patients in palliative care are generally in need of effective and consistent management of their pain. Psychological support is required extensively by the patients and the patients need to be with their family members requiring constant attention and care (Marita & Kashiwagi, 2003). The family is the most common need for such patients, along with friends, peers and medical staff. The accessibility of these services to the family of an inpatient is also another factor that patients claim they require. (Field & Behrman, 2003)

The four priorities of a palliative care currently are to carry out “clinical interventions including symptom management, methods that improve decision making and communication, arrangements that improve the quality of care and introducing different strategies to bereavement care” (Field and Behrman, 2003)

The patient and family are in constant need of staff compassionate feelings to the patient. Now nursing articles and texts are focusing on palliative care. Various monographs and other publications are also being introduced to increase competency of nurses in these fields.

Educational programs must provide sensitization about the various stages of palliative care and the biological mechanisms that accompany it pertaining to the age and condition of the patient. Since pain is the most common symptom experienced by the patient, an understanding about the pain mechanism and how it affects the emotional and psychological status of the patient should be understood. Both pharmacological and non pharmacological case management must be learned, and various tools that help assess the patient’s symptoms must be mastered. For nurses, the ability to coordinate the various aspects of palliative care practice with other health care professionals is another important area requiring mastery. Finally, an understanding of the potentials and limitations of the various life sustaining procedures and treatment should be learned alongside the ability to make informed decisions about prognosis. (Field & Behrman, 2003)

Palliative care providers must also learn to not only master the professional aspects but be able to provide competent compassionate care to the patient and family while trying to minimize severity of the emotional stress that affects the parties. They must be able to gently convey any difficult or bad news to the patient or family members, keep them up to date on developments, anticipate the type of response that the family and patient may have and manage it accordingly. Sharing goals, responsibilities and decisions with family members before carrying out any decisions is again recommended. (Field & Behrman, 2003)

Conclusion

Current increase in the number of older patients and the aging baby boomer population requires a comprehensive care. In this regard the introduction of palliative care programs is a prudent cost saving option. With increased awareness about palliative care programs as good alternatives, there is a swelling interest in diverting to these services. Improvements in the service provision as well as policy making can help develop care giving outcomes. However more expertise is needed to make palliative care programs better options. Palliative care provision is a relatively new field with lack of specialties as well as lack of proper educational resources. Identifying these challenges and managing them is important for future provision of palliative health care.

Nurses form an important component of palliative care and therefore must be adequately educated in this area. Their competency in the field is essential for smooth function of the entire program, since they are the most important stakeholders in this field. Nurses are usually the first people who are approached by the family of the patient and therefore the right compassionate and competent attitude ensures confidence for the family. These and many more interventions are required before palliative care can be embraced and considered an advanced and efficient care provision specialty.

References

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Worden, W.J. (2002) Principles and Practice of Palliative and hospice Care (2nd ed.). Berger & Weisman Publishers.

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