Hospice care: principles, practices, and patient outcomes

Hospice care refers to the end-of-life care that is provided by both health care professionals and volunteers. It includes medical, spiritual and psychological support whose goal is for the patient to have peace and comfort during their last moments. The main purpose of hospice care is for terminally-ill individuals to have improved quality of life. A secondary aim of hospice care is for the families of these individuals to have a chance to accept the position in which the patient is in. By having both patients and those close to them acknowledge the importance of appreciating their last moments together, hospice care is directed at making death less horrifying. Hospice care also provides strategies to deal with pain more effectively, to assist patients from a physical point-of-view, and to provide emotional and spiritual support for patients and their families.

Curtis E. Smith's blind survey Smith ix ()

concerning knowledge of the term "hospice care" generated much controversy as it revealed that most people are likely to know little to nothing about what hospice care actually is. This survey gave possible insight into the low uptake of hospice care as well as patients not being aware of what they are entitled to when in hospice care. As envisioned by LaPorte and Witt Sherman (29)

, when individuals are more aware of hospice care, they are more likely to understand their rights and it will increase uptake of hospice services. This will improve the quality of hospice care in general. It is thus important for society to be provided with the opportunity to get a more complex understanding of the idea of hospice care in order for the concept to actually be efficient.

History of hospice care

The hospice movement originated in Great Britain and was meant to address the issue of terminally ill individuals who did not have access to proper health care during their last moments. While it was created during the 11th century as a place "to provide hospitality, care and treatment to the dying, incurably ill, sick, or wounded" Smith 1()

, it was not until recently that hospice care consolidated its position in society and actually became a method for terminally ill patients to experience a less painful passing. The first steps towards what is known as modern day hospice care involved individuals with advanced cancer who were reluctant to try aggressive therapy and simply wanted to spend their last moments in peace. As a result of this, the society gradually understood that hospice care could be effective in a series of other cases involving chronic diseases that were likely to cause the death of individuals having them. As uptake of hospice services improved, individuals ailing from maladies such as AIDS, serious heart and pulmonary infections, and dementia were more commonly admitted in hospice care institutions.

Methods for patient management

There are five primary methods that are used to achieve patient management in hospice care. These are drug therapy, counseling, visualization, cognitive and relaxation therapy. Palliative care which is an essential part of hospice care involves caregivers from multiple disciplines such as physicians, nurses, pharmacists, chaplains, psychologists and social workers working together to formulate a plan to care for the patient and address their physical, spiritual, emotional and social concerns that lead to pain and suffering. The usual steps in providing palliative care starts by assessing the symptoms and levels of pain, depression, activity, nausea, anxiety, appetite, drowsiness and well-being. The caregivers then start the process of symptom management depending on the various levels as analyzed. They may then choose to administer pain medication such as anticonvulsants, antipsychotics to treat nausea, morphine for dyspnea. Counseling may also be done by psychologists and social workers to advice and provide guidance to the terminally ill patients. Counseling may also be provided to family members in some cases in order for them to provide support for their patient. Counseling majorly addresses the emotional and psychological aspects of palliative care. Visualization is also another method that is used in palliative care. It involves the patient being able to 'visualize' the end and have a picture of peace, dignity and comfort. It is achieved through several ways such as visual aids and through counseling of patients. Cognitive therapy in palliative care is majorly targeted at relieving anxiety, stress and depression among the terminally ill patients. This is achieved by changing the negative thought processes and behaviors in terminally ill patients to improve ther mode, reduce pain and anxiety. Lastly, relaxation therapy involves several tactics such as use of music, massages, yoga, deep breathing, prayer, meditation, and self-hypnosis in order to achieve stress and pain reduction.

Patients present in hospice care institutions are encouraged to get actively involved in improving their lives. "Get adequate rest, eat a proper diet and participate in regular physical exercise" Volker and Watson 25()

are some of the things that most hospice care caregivers promote in order to assist their patients. Medication and physiotherapy strategies are devised in an attempt to address pain directly. Movement is in many cases an excellent method to contribute to the pain management pyramid. Methods such as acupuncture, massage, thermal therapy, tissue mobilization, and stretching can be in many situations essential in making the difference between an optimistic terminally ill patients and one who feels that it would be pointless for him or her to try and appreciate his or her last moments.

Hospice care caregivers normally consider physical well-being of the terminally ill patients as the principal idea that they need to focus on. By having patients feel better from a physical, emotional, psychological, and spiritual point-of-view, hospice care improves their last phase of life and enables both them and their close-ones to enjoy their time together to the fullest. For example, in the case of cancer patients, the fact that they are no longer weakened by aggressive therapeutic strategies contributes to them feeling better physically and to them being able to spend time with those close to them without being impeded by their condition. Being able to live the last moments of one's life without being limited from a physical perspective can mean everything for some patients, as they take advantage of these respective moments and go through great efforts with the purpose of accepting death and appreciating the fragile nature of life. Physical activity is an effective strategy to making it possible for patients to keep their strength and their vitality until the last phase of their lives. The fact that they are constantly subjected to activities that require physical action makes patients feel that they are not excluded and encourages them to maintain a vigorous attitude in spite of the fact that their health is gradually fading.

Pain management

Pain is a common characteristic of most terminally ill patients and this is why it is important for their families and for society as a whole to provide an environment that can lessen their pain and suffering as they go through their final moments. Palliative medicine or care which is a crucial component of hospice care is meant to lessen their pain and suffering. Hospice care is thus a direct method of dealing with terminal illnesses as it is focused on improving the quality of life for the patient and their family. "The goal is to intervene in the pain cycle, to stop the pain, and then to prevent its return so that patients do not have to live on the dehumanizing merry-go-round of alternating episodes of pain and relief" Volicer and Hurley 258.

One of the primary purposes of hospice care involves pain and symptoms management so that these patients suffer as little as possible. Hospice care does not attempt to misrepresent terminal illnesses as less challenging. Rather it simply emphasizes that an individual does not necessarily have to abandon any thought of happiness as a result of their fear of death, pain or suffering Volker and Watson 15()

Challenges in providing hospice care

Caring for individuals with terminal illnesses can be problematic both for their families and for professional caregivers. This is why hospice care involves doctors and strategies that are especially prepared to deal with difficult situations. Experiencing a terminal illness is likely to involve the patient gradually losing his or her independence and requiring increasingly more care. For these patients, death is a frightening concept and the simple thought of dying is enough to scare most of them regardless of their condition or personality Coleman 10.

As a result of their mindset being afraid of death, challenges exist for caregivers and family members. One major challenge comes in trying to change how these individuals perceive death and get them to accept it as a stage of life and not be frightened about it Sachs, Shega and Cox-Hayley 1058.

Another challenge comes in trying to get these patients not to despair. Getting them to appreciate life and to accept their situation is a huge challenge.

Role of family members in hospice care

Hospice care has helped many terminally ill patients to experience a peaceful death with little to no physical pain. However, they are often emotionally isolated and are unable to determine whether or not they are loved by their family members or whether they will be missed after passing on. This often happens because the family members are not directly involved in providing hospice care to their patients. Hospice care can be a great way of strengthening the connection between the terminally ill patient and their loved ones and family members. It is thus essential for hospice care professionals to support interactions between patients and their family members for the latter to make extra efforts to make them feel that they are loved.

Conventional medical care institutions often fail to provide adequate care to terminally ill patients because professionals at these institutions do not understand the crucial part that family members play in the last moments of the terminally ill patient. This is part of the case that is put forward by Armstrong-Dailey (76)

that "many families have surprised professionals with their strength, insight, and ability to provide care in the face of tragedy." Families reinforce the emotional connection between caregivers and patients and enable the latter to acknowledge that death is less frightening when knowing that they are loved and appreciated.

Sadness, depression and anger are very common in terminally ill patients which is another reason why it is important for hospice care professionals to ensure that family members are involved in the hospice care process. This is with regard to the attitude the terminally ill patients may have toward their family. The patient may be angry at their family, at God, or at health care professionals for failing to do all they can to prevent or cure the illness or for failing to alleviate their pain and suffering. "Sometimes adults, with the best of intentions, misdirect their attention when they believe there is a 'right' way to help, or they search for the 'correct' procedure or technique" Armstrong-Dailey 169.

Caregivers and family members thus have to acknowledge that there is no standard care they can provide patients with. The fact that each individual is unique means that a personalized attitude needs to be employed in the case of each patient. The caregivers thus need to engage the family in order to understand the patient uniquely thus provide appropriate care.

There is no place for criticism of patients in hospice care. Therefore both hospice care professionals and family members have to understand that openness is crucial and family members should not show a judgmental attitude. The best illustration of this is in devising coping mechanisms for patient. Coping is one of the most efficient techniques one can possibly consider for hospice care. The caregivers thus need to provide the patient with sufficient knowledge for them to adopt the appropriate coping strategies which may be difficult to adopt and develop Thayyil and Cherumanalil 216.

Coping strategies need to be tailored for the patient since when the wrong strategy is adopted, it will fail terribly. Furthermore, if the family members have a judgmental attitude toward the patient, they will not be able to cope thus leading to failure.