Now that the idea of hospice care has come to materialize, it is hard to imagine how people managed to exist without it. Today, hospice care is an alternative that people cannot turn their backs on to. Some people are not familiar with hospice care, but they all know for sure that they need something exactly like this.
Hospice was a term long coined. It used to literally mean a home for rest. It is a shelter for people who needed to relax after a long journey. A hospice is used to be a home for travelers who became sick because of too much stress and fatigue from traveling. Today, the term “hospice” is a home for dying people (Matthews and Berman, 2008, p. 250).
Therefore, hospice care, is the type of health care service provided for terminally ill people. The primary goal of hospice care is to make sure that the terminally ill individuals are enjoying quality lives as they spend their last days on Earth. Hospice care is about rendering compassionate and humane care for dying patients – especially those who are suffering from cancer and AIDS, among many other incurable illnesses (Matthews and Berman, 2008, p. 250). Hospice care is indeed a significant part of the health care industry because dying patients need to live as comfortably as possible especially in the last stages of their disease.
The role of hospice care to HIV patients is to let the patients know that dying is normal. Death will arrive at everyone, but only in different times. What hospice does to these HIV patients is to enable them to do the things they normally do, and not let the thought of dying get the better of them. It is important not only for terminally ill individuals but for everyone as well, to live their lives with quality and dignity. This is what hospice care is aiming at for their clients (Matthews and Berman, 2008, p. 250). Hospice care is about making sure that the focus of life is not quantity but quality. It makes sure that the dying patients spend their time with their loved ones before they say goodbye.
The philosophy behind hospice care is rendering family-centered care. There are decisions that have to be made in the long run, and the family of the dying person is always involved all throughout the decision-making process. Since care is family-centered, the family should be around the dying patient 24/7. Hospice care is not necessarily done in a private hospice facility. Sometimes, the care is rendered at nursing homes, hospitals, and even at the home of the patient. In the United States, caregivers and family members help in letting the dying patient enjoy quality life (Matthews and Berman, 2008, p. 251).
Hospice care is fit for an HIV positive patient if treatments are no longer effective and he no longer benefits from therapies and medications. Hospice care is recommended if he is expected to live for a maximum of six months. The HIV-positive patient will not be cured, but the symptoms of his disease will be relieved. He will decide, together with a doctor and his family members, about when to start hospice care (Matthews and Berman, 2008, p. 251).
Hospice care is not perfect, and the problem comes in when it is not started the moment it is needed. The delay is usually because any of the parties involved, which can either be the family member, the patient, or the doctor himself, may think that hospice care is not about giving quality life, but is about sending the message that there is no hope for the dying patient. Because of this, care is delayed (Nokes, 1996, p. 91).
What people do not know is that there is always a chance that life expectancy is changed. For example, if the HIV-positive patient is expected to live for only three months, it does not mean that he will definitely die three months after it is announced. Sometimes, if proper care is given and the patient responds gracefully to what is provided to him, there is a very high chance that he may be taken out of hospice and live a normal life outside hospice. If hospice care is needed, then he can go back to it anytime. It is a misnomer that hospice care is synonymous to the absence of hope (Nokes, 1996, p. 91).
Then again, it sounds strange when the terms HIV and hospice care are put together. Cancer is acceptable for hospice care providers to manage because it is not contagious. How about HIV? How does the disease affect the care provided to HIV-positive patients?
HIV and Hospice Care – The people working in a hospice who are tasked to take care of HIV-positive patients feel that their job is a roller coaster, as much as the patients feel that their lives are a roller coaster, too. Caregivers demand that management of HIV-positive patients be addressed for both the families of choice and the families of origin. Caregivers deal with HIV-positive patients by giving them a support system that takes away ostracizing and getting stigmatized. Palliative care is employed, which means that symptoms of the disease are relieved through different clinical methods. Respect and hope for patients are also fostered, in the same way that these two values are also given to the people who are providing care in the hospice (Nokes, 1996, p. 91).
Because of the social stigma of AIDS/HIV, it is then a challenge for caregivers to do their jobs. Then again, as professionals, they are given form a partnership with their patients based on respect and mutual trust. Caregivers are doubly cautious of rendering service, and it is no surprise that sometimes, some caregivers are infected, too. Because of the complexity of their job, they are given support needs, too, since it cannot be denied that cases of caregivers getting infected are growing. Caregivers, sooner or later, have to go through palliative care, too (Wass and Neimeyer, 1995, p. 463).
Having said that, the quality of care given to HIV-positive patients are not changed because as the problem grows, the whole industry of hospice care has set up an interdisciplinary team made of hospice care providers who are all highly professional when it comes to doing their jobs. They have all the possible protections against the disease. Hospice care providers, however, are not limited to nurses and doctors, but also to family members who are providing support and care to the patient (Wass and Neimeyer, 1995, p. 463).
A palliative care team or an interdisciplinary hospice team is a big help in fixing issues of fear, shame and isolation. These issues need to be addressed because HIV affects hospice care by making care providers feel isolated, fearful and embarrassed at different levels. Some care providers also feel that they do not have enough power to provide care for a patient who is suffering from a disease that is larger than life (Wass and Neimeyer, 1995, p. 463).
How Hospice Caregivers Do Their Job
Many HIV patients today don’t want to be put into hospice care because they think that hospice means their battle with the disease is over. While there are some hospice homes around the world, hospice refers to the philosophy of caring rather than the place where patients are treated. In fact, many hospice care services today are done in the patient’s home. Hospitalization is only necessary when more specialized equipment is needed to relieve the patient’s symptoms (O’rawe and Tehan, 1991, p 171).
Today, nurses, doctors, and other medical professionals are working hard to provide hospice care for patients. The goal of their treatment is to improve the patients’ quality of life rather than to provide cure. This goal requires a different kind of knowledge and treatment approach. When it comes to HIV, medical professionals employ strategies to keep themselves protected from the disease, so they can provide the care patients need (O’rawe and Tehan, 1991, p 171).
HIV is shaping hospice service through the implementation of various procedures to protect health care workers from acquiring the virus. Since nurses and other medical workers work very closely with patients in hospices, they are in danger of getting exposed to the virus. To solve this problem, the World Health Organization is working hand in hand with health departments and hospices around the globe to promote guidelines that safeguard the health of medical workers (O’rawe and Tehan, 1991, p 171).
The common cause of HIV infection in hospices and other medical settings is the transmission of the virus through percutaneous injuries. Nurses and other health care professionals may get infected through needles and other sharp instruments. Some patients may also get violent and try to bite the skin of the health care worker, resulting in infection (O’rawe and Tehan, 1991, p 175).
The risk of transmission after exposure to HIV-infected blood is about three per one thousand injuries. While this is low, medical workers should still be very concerned with their health because they are the ones who provide treatment to patients. The last thing the health care system needs is the transmission of the virus through the very institutions where the virus is supposed to be contained (O’rawe and Tehan, 1991, p 175).
Hospices are now implementing some procedures to avoid the transmission of virus to medical workers. If a medical worker sustains percutaneous injury, then the site of the injury must be liberally washed with germicidal soap and water without scrubbing. The person must bleed the site by gently pressing around the injury (O’rawe and Tehan, 1991, p 175). It’s best to perform this procedure while washing the injury under a water tap. There are also a few instances when health care workers acquired the virus through exposure to their eyes. Infected blood may splash in the eyes of health care workers, so they must see to it that they handle patients very carefully.
The WHO has their own precautions to protect the health of health care workers in hospices and hospitals around the world. In addition to washing the infected site, the WHO advises professionals to disinfect contaminated instruments before using them again. If it’s necessary to handle soiled linen, then workers must focus on handling it properly. Soiled linen should be cleaned outside areas where patients are treated using hot water and detergent (O’rawe and Tehan, 1991, p 175).
The WHO promotes the use of disposable injection in all hospices. Hospices must only consider sterilizing their equipment if disposable equipment is not available. Moreover, sterilization should be documented using time, temperature and steam indicators. Lastly, all disposable pieces of equipment must be discarded in sealed containers that are destroyed prior to being full (Institute of Medicine, 1986, p. 143).
Not all hospices are currently employing these procedures, so they must be informed on how to practice them. Hospices in faraway regions, such as those operating in Africa, should also have more access to equipment and information that will help control the transmission of the virus. The WHO needs to work more closely with hospices around the globe to make sure that their precautions are followed by nurses and other health care workers (Institute of Medicine, 1986, p. 143).
HIV as a virus affects hospice care – this cannot be denied. Performance of employees is easily affected. With this, the hospice care industry set up interdisciplinary health care team where trained volunteers, therapists, clergy, home health aides, counselors, social workers, nurses and doctors all work hand in hand to provide quality hospice care service despite potential issues (Institute of Medicine, 1986, p. 143).
Controlling pain and symptoms is also a significant part of battling potential havoc in the hospice care industry because no matter how mean the world is to the dying patient; health care providers still make sure that life, for the patient, is still beautiful and comfortable by controlling pain and symptoms (Institute of Medicine, 1986, p. 143).
HIV-positive patients and the health care providers as well, are given their spiritual needs. Service rendered may also be through inpatient care of home care, depending on where the patient is more comfortable. Family conferences are made regular and bereavement care is provided. Extended help from volunteers and support from staff also exist (Institute of Medicine, 1986, p. 143). With all these pieces of information, no matter how HIV affects hospice care, the providers know better.
Matthews, J. L. and Berman, D. M. (2008). Social Security, Medicare ; Government Pensions: Get the Most Out of Your Retirement and Medical Benefits. Nolo.
Nokes, K. M. (1996). HIV/AIDS and the Older Adult. Taylor ; Francis.
Wass, H. and Neimeyer, R. (1995). Dying: Facing the Facts. Taylor ; Francis.
O’Rawe, M. and Tehan, C. (1991). AIDS and the Hospice Community. Haworth Press.
Institute of Medicine. (1986). Confronting AIDS: Directions for Public Health, Health Care, and Research. National Academy Press.
Huba, G., L. Melchoir and Brown, V. (2000). Evaluating HIV/AIDS Treatment Programs: Innovative Methods and Findings. Haworth Press.