The Concept of Palliative Care

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Introduction

Palliative care is any form of treatment by medical care that is meant to reduce the seriousness of the symptoms causing a certain disease, in place of curing the disease. The main motivation for this system of care is to reduce the suffering and to improve the lives of people who are facing complex and serious illnesses. (Davis, 2001) The symptoms may include pain, constipation, loss of appetite, lack of sleep, and vomiting. Palliative care helps patients to understand and to choose how they can be cared for. The comfort of the patient is always given priority so as that of their families.

Definition of palliative care

Palliative care can also be defined as an approach that is employed to improve the quality of life for sick people and their families who have been affected by life-threatening diseases. This is done through relieving and prevention of suffering by identifying the symptoms early and also through critical assessment of those signs to treat the pain and other problems such as physical, spiritual, and psychological.

Palliative care, therefore, is very important in that:

It relieves the patients from pain and reduces stress inflicted by the various disease-causing symptoms.
It ensures that life is very critical for every human being and everyone has a right to live a decent life. Death is also viewed as a normal process in which everyone has to undergo it.
Doesn’t intend to increase the lifespan of the patient nor do they want to hasten it.
Ensure that the patient’s morale is boosted by motivating them spiritually and also psychologically.
It ensures that the patients remain active throughout their lifetime. They do this by providing the patients with a support system.
The families of the affected patients are also provided with support systems to enable them to overcome the hardship during the patient’s life and also after the patient’s death.
Provides assistance and support to the patients and also to their families whenever they are in need. This involves providing them with a counseling team when the hardships are difficult to overcome and also during the time of mourning.
Constantly advise the patients on the positive and the quality of life to improve the angle in which the sick view about life.
It provides care early in the patient’s life. This is achieved by incorporating with other therapies whose main motives are to prolong the life of patients e.g. chemotherapy. Investigations are done in the ways of reducing and managing the distressing symptoms. (Gormley,1999).

Who defines palliative care for children using the following principles

Palliative care for children is the absolute care that is provided to the child’s body, mind, spirit and also supporting the child’s family.
It usually starts after the diagnosis of the illness and goes on despite the child being given the treatment for the disease or not.
Providers of the care must first of all study child’s psychological physical and social conditions and try to assist the child come through all these.
Successful implementation of palliative care requires support from the child’s family and also from the rest of the community in terms of resource allocation. Palliative care can still be successful even if the resources are scarce.
Palliative care can also be provided in health centers, children’s homes, and also other tertiary facilities that provide care to the children. (Tannisio, 1999).

Providers of palliative care

Palliative care is mostly provided by two different health and social professions.

Some provide these services on a day-to-day basis to patients who are at home and also to those who are at the hospital.
There are those specialists who have specialized in palliative care and therefore provides these services at their hospitals.

Those who are providing this care on day – to –day basis are required to carefully study and access the needs of their patients and also their parents. These studies should be based on the physical, mental, and spiritual state of the patient. They should also be able to meet all the requirements that are required for anyone to conduct this service. They should also seek any assistance from professionals who are trained to provide these services whenever they are in need. ( Jennings, 2004).

Specialists in palliative care also providers this kind of care to the affected patients and their families. They accomplish these by assessing and providing advice to the affected patients and the families who are either at the hospital or in their homes. Specialists provide this care to all the patients who are in hospitals by providing them with the required care and support. They are also supposed to provide coordination to the services provided to the patients who have wished to stay at home due to complex needs. This may involve ensuring that the patient is given his doctor who will be assisted by the district nurse. Also, this team of specialists can team up together to provide nursing and medical services and also support the patients at their own homes. Their responsibilities also lie in the provision of assessment facilities to the patient’s needs in terms of provision for physical and social needs. They also provide support to all those people who are involved in caring for the patient. This involves assisting them after the patient’s death and also supporting them when they are bereaving. The areas are also involved in training and educating the patients and also their family members. The specialist team usually includes medical consultants and a care nurse specialist. Physiotherapists and also occupational therapists should be included.

Hospice vs Home Palliacitce Care

Home palliative care is characterized by the varied nature of its interventions. Home palliative care includes individual nurses who do not have clear training, personal doctors, and varied professional teams. The teams mostly come from hospitals or hospices. Some studies indicated that the professionals came from palliative care and most of them were not where they came from.

The outcome of the various studies indicates that patients were satisfied with the home palliative care because most of the services were quality. This was because these services were offered by professional teams and most of the staff were trained to some extent. The studies have also indicated that there was a lower cost for the home palliative care and most of their staff have to work in multi-professional teams and obtain some training on palliative care to improve the outcome.

In Hospital palliative care, most of the studies conducted showed that the care was a grade2. The study indicates that those in the hospital usually spent less time in the hospital and the quality of life reduced significantly as time passed by. The staff mostly includes a nurse and a surgical doctor.

There is a common similarity between hospice care and palliative care when it comes to the issue of sick people. That is care: Hospice usually provides palliative care services. This palliative care provided by the hospice differs slightly from the usual palliative care this is because hospice palliative care involves administering comfort, care through an administered system and is usually offered by the hospitals. Both hospice and home care usually require patients to receive most of the services in a single approach where medications, equipment, counseling, day–to–day services, and treatment of the symptoms are done using a single program. Though hospice and home palliative care have similarities in the way they deliver their services, they also differ so much in terms of care location, payment, timing, and ability to deliver services. (Lumby, 2001).

Place

Hospice

The hospital provides so many programs as compared to those of Home palliative care. After enrolling through the permission obtained from the care physically, and after the patients in the hospice program being endorsed by professionals from the hospice team, care is allowed to be conducted and carried out at home. Hospice care program usually relies on the patients family as well as the visiting nurses from hospice. Though hospice usually provides care on 24 hours basis, mostly in hospitals and sometimes in specially equipped hospice facilities, sometimes their services can be provided at the patient’s home.

Home palliative care

Home palliative care team are usually made up of professional medical teams which include doctors, and nurses. These professionals are usually located at the place where the patient will receive the treatment i.e., usually at the patients home. These professionals will be respectable for ensuring that the patient receives the required comfort – care and also to supervise all the services offered. Though home palliative care usually takes place at home. Sometimes palliative care team provides this service at the hospital.

Timing

Hospice

For one to be considered in most hospice programs and also to receive insurance, benefits one must be within six months of death.

Home palliative care

Home palliative care has no restrictions in terms of time. These services can be provided to patients at any time and whatever stage of illness. It should not really be terminal or not.

Payment

Hospice

Hospices usually have policies regarding payment units. Hospice programs usually cover almost all the expenses because all their services have been paid for. These payments are usually done in form of insurance policies.

The in-services policies coverage for hospice care usually varies. Other hospice programs usually assist those who are economically capable or to those who were not covered by their insurance policies. Most of the hospice programs are usually covered by Medicare.

Home palliative care

In-home palliative care every item and service they provide will be paid separately. These payments are usually made to the doctors and care nurses during their regular visits. The prescriptions made for the outpatient palliative care patients are usually paid differently and are done according to the regular insurance coverage.

Treatment

Hospice

Hospice programs usually provide more comfortable services rather than concentrating their services on reducing pain inflicted by various diseases to the patients. This is because the hospice program decided to forego those treatments which extend the life of an individual, by making the patients have the maximum comfort out of the little time they are left with. They decided to forego life-prolonging treatment because they did not want their patients to suffer much from the side effects which are a result of using life-prolonging drugs. Most hospice care services involve preparing the patient both emotionally and practically to achieve the level of comfort that can make him/her die conformably. ( Allen,& Brock, 2003).

Home palliative care

This palliative care does not have a time limit for an individual to be provided with this care unlike hospice, this system of care can provide their patients with comfort and care at any stage. Therefore patients undergoing this system of care can receive the care at any time of their illness period. Also in-home palliative care, life-prolonging drugs are mainly used. These drugs are mainly meant to extend the life of the patient as he is being cared for. The side effects of the life-prolonging drugs are treated while the individual is being provided with care. (Hanson, & Callanhan,1999).

Treatment issues form Ethical perspective

Beneficence

The principle of beneficence mainly is to act in mind others’ interests. That is every individual has a moral obligation to act to benefit others. This principle seems obvious to many who want to offer help to other people. Though it looks obvious there are so many risks associated with it. At times we offer so much help to our patients as it reaches a time that we believe that everything which is best for them is known to us. Sometimes we hold a belief that the patient should follow each and everything we say because we know what is best for them regarding their conditions. This kind of behavior in which a person knows and declares the preference of others is usually called paternalism when we force some ideas on patients because we pretend that we know more than them, even if they do not want them, we risk crossing the boundary to paternalism. When this happens, the patient’s independence is not given the respect they deserve. Example of paternalism includes. Depriving information to patients to support you in making some decisions, giving the patient the treatment they do not require. (Cricton, Robertsom, Gordon, & Farrant 1997).

Non – maleficence

The principle of non-maleficence states that no harm is to be inflicted intentionally. This principle is mostly seen to be applied in the hospital environment where the health care employees, only want to help people by providing the necessary services and not harming them. Usually, the issue of non-maleficence comes in place when the patient is nearing to die. Here the decision about the importance of the treatment to the patient takes center stage. Physical therapists are not usually involved in deciding about the end–of–life action to a certain patient but they are usually involved in discussing options with either patients, family members, or any patient’s relatives. These options might include whether or not to withdraw from the life-supporting system. Patients should also be given a chance about their desire to prolong their lives using life-supporting machines. Though other patients might decide to be left to die without using the supporting machines, physicians, nurses, and the patient’s family members should be conducted so that their wishes can be known. Other treatments on physical therapy might not be very comfortable to patients. In such cases, a continuation of the treatments to patients who might not last long requires an ethical decision. This is because the patients might not gain or benefit from the treatment instead the treatment might be inflicting so much pain to the patient. In such a case the patient’s wishes and his/her life should be considered and not necessarily believing in the physical therapist. ( Jennings, Ryndes, D’onotro & Baily,2003).

Justice

Justice is usually defined as a form of fairness in health care. Air stokes also once said, “giving to each that which is his due.” This means that when distributing anything we’ve to look and decide on who deserves it. This principle also applies in the way of distributing resources. Due to the current scarcity of various resources, a fair means should be developed in the way these resources are distributed. It is generally believed that equal people are qualified to receive equal treatment.

This is usually applied by Medicare and is already available to persons over the age of 65 years. The people in this group have been categorized by use of their age. There are various factors today which are being used to categorize people for them to get fair justice. These factors include:

Each person should receive an equal share.
Each person is rewarded according to the need.
Each person is recommended according to the effort.
Each person is recognized according to the contribution.
Each person is grouped according to the merit.
Each person is rewarded according to free-market exchanges.

The general society has to obtain a fair playing group by assisting in any disadvantaged situation in terms of resources provided. One of the fundamental issues facing health care today is the question of who has the right to health care? That is the society should be fair to all citizens regardless of their economic status so that every citizen have access to quality health care.

Autonomy

The principle of autonomy states that the patient should be treated according to the patient’s desires and all health professionals must implement this. Health professionals are also required to provide the treatment according to the customer’s preferences without crossing the boundaries. The patient’s confidentiality should also be protected by avoiding disclosing any confidential issues. The doctor is required to provide meaningful treatments to the patients. This involves considering the needs the patient requires, the patient’s ability, and protecting the patient’s privacy. (Leathard,2003).

Freedom

These principles state that patients should be given the freedom to choose what they think is right for them. Health care professionals should not force patients to undergo certain treatments which they do not wish to go through. They should also be given the freedom to have access to all the information regarding their performance on the treatment they are going through. This will help them so much especially in deciding their future ways of treatments. Decisions on whether to continue using the life support machines or not should also be left to be decided by the patient himself/herself. (Murray, 2002).

Concepts of Good Health

To have good health the following principles help in ensuring that these health concepts are achieved in the community in which we live and care for others.

Equity

This principle states that all human beings have equal health rights, despite their economical status, race, country, or areas with which they come from. The rich should help the poor whenever he/she is sick and cannot afford the health services. Every country should ensure that hospitals are built close to the people and no areas should be deprived of this important facility. The cheap and affordable hospital should be constructed in rural areas to help those who cannot be able to pay for the services to have access to it. Human rights groups or other groups of people who are held in high esteem in society should help those disadvantaged groups of people to acquire treatment services in their time of need. (Cassell, 2003).

Community participation

All the communities leaving in every country should be informed about their rights to access health facilities. The poor communities mostly living in rural areas should be taught about the availability of free medical services in public hospitals. Other services which are also free and readily available at their disposal should be made known to them. All the communities should be well motivated to participate in various stages of decision-making concerning their health. This involves participating in helping the needy by providing the health care personnel with the required resources that are used to uplift those most disadvantaged in society. They should also assist in planning the ways of improving the health conditions in their surrounding communities. This has to be done in conjunction with their area’s health care personnel. The community should also assist in the implementation of every issue that has been set to improve the health conditions not just for themselves but also for their immediate neighbors. (Macnamara, 2001).

Inter – sectoral collaboration

The co-operation of voluntary groups, organizations, and the community is also a very important issue in ensuring that good health is being provided to the people. The co-operation of citizens at the local level will help in identifying those people who need health services and cannot be able to achieve it. Such information if given to the various organizations and voluntary groups will assist much because he will be able to receive free medical services. This collaboration also will assist very much in identifying areas which require urgent medical requirement. E.g. hospital. This hospital might get free financers who will be ready and willing to build the structures. The governmental and nongovernmental organizations should ensure that health-related issues should be on the agenda of public institutions dealing with policymaking. (Langton, 2000).

A good death

Definition of good death

A good death can be defined as an acceptable way of dying. But this definition has led to contradiction because what is acceptable in one society might not be accepted in another Weisman (1978, P.193) proposed various factors on the ways of maintaining patients’ physical, psychological, and social way of life to enable him/her have a peaceful death. A person who is to die on appropriate death should have all the symptoms causing diseases reduced to be relived from pain. All the care should be given to the patient and also he/she should be encouraged to live and perform everything to the scope of his/her capability. Necessary attention should be focused on the sick person to help him/her come out of the miseries by providing the person with whatever requirement he needs. The patient therefore according to Weisman should be allowed to explore numerous choices that can enable him/her to live and have whatever he/she requires

In trying to define a good death, Steinhauser gathers various definitions from seventy-five doctors nurses, patients and social workers. He then identified six components of a good death:

Pain and symptom management. Almost everybody fears a peaceful death. The fear of the pain which is inflicted by the disease-causing symptoms can cause a lot of stress and worry to the patient and its family members. But on many occasions these worries can be reduced whenever there is clear strategies on the ways of making decisions
Clear Decision Making. Patients feel great when they are included in the decision-making process. These decisions include the way of planning treatment options for the patient. The patient will feel great if he/she is involved in this process. In order to successfully reduce the pain on the disease affecting the patient, good communication between the patient, family members, and the physician is required.
Preparation for death. Patients have to know what is expected of them during the period of their illness. This will help them in planning for the events that will come after their death. These involve the writing of the will, the preparation of their funeral, and also contributing to the writing of the obituary patients who are involved in the preparation of their deaths feel very much satisfied because they feel they have met all the requirements which are expected of them before they die.
Family members can prepare for the patient’s death by getting ready mentally and physically to fill into the shoes of the patient after his death. They can also get prepared not to waste so much money in the last-minute rushes of the patients to the hospital due to them panicking. They can therefore allow the patient to die peacefully at home
Completion. The patient can have time to review what he/she has accomplished in life, settled any pending matters and also having time to part with their family members and friends. The issue of the spiritual faith of an individual can also be reviewed.
Contribution to others. Many patients usually have a feeling to share whatever they have. They recognize the importance of the human-to-human relationship. They can therefore give out gifts, money, or their possessions which then can be useful to others after the patient’s death.
Affirmation of the whole person. The caretakers should ensure that they are dealing with and caring for an individual who is a normal human being. The value of the life of an individual should be given priority before anything else. The sick person should therefore not be viewed in terms of the disease they have but should be viewed like any other complete human being.

Sources of Stress and Burnouts

The strain of providing care is mainly seen to impact those who are providing the care and also to the patients. The stress mainly results from two factors:

Sources of stress.
The stress mediators.

The major sources of stress are the situational characteristics of the patient and the caretaker. The stress mediators involve the resources of the patient and also the caretaker. The resources might include the social support and the style of the patient and care provider coping and reduction in the provision of care. These might impact negatively on the health of the patient and the caretaker.

Sources of care giving stress

Factors related to illness

Serious diseases and a threat to the lives of the patients reduce the quality of life for the patient. This may negatively have a serious impact on the mental health of the patient thus increasing stress to the care provider. An example of such illnesses is heart-related diseases which usually cause mental disturbance to the sick thus increasing stress.

Caregiving situation

The situation of giving particular care can increase the influence and the amount of stress experienced. These might involve the environmental resident of the patient, the economic situations, the degree and the amount of care which are provided to the patient, and also the number of people providing the care.

Environmental context of the home

The environment might affect the patient in terms of the patient’s adaptation and the patient’s needs. The inability of the patient to respond to the various demands related to the environment might affect the patient negatively. This then leads to overdependence of the patient on the caretaker.

Economic Burden

The medical conditions of the patient lead to overdependence on care providers and life-supporting medical treatment which may reduce the amount of the patient’s money and that of the family. This may then cause stress because the family members will have less money to sustain them.

Single Vs Shared care giving

The sharing of caregiving duties is likely to reduce the stress of the caretaker. The workload in the provision of necessary assistance demanded by the patient is reduced because the demands can be handled by two or more people. A single caretaker is likely to get stress resulting from too much work done in responding to the demands.

Stress and burnouts on Palliative nurses

Most staff nurses who are providing palliative care face so much stress in that:

The nurses are generally stigmatized for working with people who are not going to live.
Some of the patients for which the nurses work are suffering from diseases that do not have a cure e.g. HIV AIDS.
Nurses might fear to come in contact with some of the patients which can expose them to getting infected with the disease.
The association of palliative patients makes them always come in contact with the death and dying.

Therefore the stresses and burnout that can face the palliative nurses and the health worker are categorized as:

Fears on the staff.
Associations issues
Role and professional issues
Stigma and discrimination.

Fears on the side of staff

Palliative staff fears being contaminated and infected with the same kind of disease as that of the patient. Some patients even have been denied access to palliative care because their illnesses are feared to be contagious and can be transmitted to the staff. Most of the staff is known to avoid such kind of patient because they fear the same kind of disease can be transmitted to them.

Issues of Association

Palliative care staff is required to associate with patients who are from the same age group. The association of their grieving family members can course stress to the staff. Issues of stigmatization because of associating with the sick can also arise.

Role and Professional issues

The work definition to the staff sometimes causes them to work under conditions they are not comfortable with. Some staff is forced to associate with patients whom they are not comfortable with but because they are guided by certain rules and regulations and therefore they have to do it. E.g. a survey conducted by Ross and Seeger (1988) concluded that 33 percent and 43 percent of 108 staff workers had stress working with patients who were sick from Aids-related illness.

Stigma and Discrimination

The association of the palliative care staff with the sick and the threat of them being infected by some contagious diseases results in this stigmatization. The stigmatization also comes in terms of their association with the already marginalized groups of people.

References

Allen, J. & Brock, S.A. (2003) Health care communication using personality Type: patients are different. New york Routledge.

Cassell, Eric J. (2003). Doctoring: The Nature of primary care medicine. Oxford, England. Oxford university.

Cricton, A;. Robertsom, A; Gordon, C, & Farrant W. (1997) Health care: A community concern. Calgary.University of calgary.

Davis, J. B. (2001). The social economic of health care New York. Rutledge.

Foley, K( 2005). The Hastings centre report. The past and future of palliative care, Vol. 35.

Gormley, K. (1999). Social policy and health care Edinburgh Chuclou Livingston T.

Jennings, B (2004). The hasting centre report.Field Notes Vol. 34.

Hanson, M.J. & Callanhan, D. (1999). The Goals of medine: The Forgotten issue in health care reform, Washington , Dr Georgetown university press.

Jennings, B. (Ryndes, T. D’onotro C, & Baily. M.A.; (2003). The hasting center. Access to Hospice care: Expanding Boundaries, overcoming Barrers. Vol 33.

Langton, H. (2000). The child with cancer. Family centred care in practice. Edin burgn Balliere Tindau.

Leathard (2003). Inter-professional collaboration: from policy to practice in Health and social care New York. Brunner – Routeledge.

Lumby, J. (2001) who cares? The changing Health care system. crows Nest, N.S.W. Allen & Unwin.

Macnamara, B (2001). Fragile lives : Dead:Dying and care crow nest. Alllen & Unwin.

Murray, J. (2002) Intensive care. A doctors. Journal Berkeley, C.A. University of California press.

Tannisio, T. (1999) Coercive care: The ethics of choice in health and medicine,. New York. Routledge.

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Introduction

Definition of palliative care

Who defines palliative care for children using the following principles

Providers of palliative care

Hospice vs Home Palliacitce Care

Place

Hospice

Home palliative care

Timing

Hospice

Home palliative care

Payment

Hospice

Home palliative care

Treatment

Hospice

Home palliative care

Treatment issues form Ethical perspective

Beneficence

Non – maleficence

Justice

Autonomy

Freedom

Concepts of Good Health

Equity

Community participation

Inter – sectoral collaboration

A good death

Definition of good death

Sources of Stress and Burnouts

Sources of care giving stress

Factors related to illness

Caregiving situation

Environmental context of the home

Economic Burden

Single Vs Shared care giving

Stress and burnouts on Palliative nurses

Fears on the side of staff

Issues of Association

Role and Professional issues

Stigma and Discrimination

References

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