How to Achieve Compassionate Care with the Patient and the Caregiver in Terminally Ill Patients

This author’s personal perceptions concerning patients facing a lingering terminal illness, have been shaped by over 20 years of critical care nursing experience. Facing death and illness on a daily basis requires self-examination and a high degree of comfort with one’s own mortality, limits and values. Constant exposure to the fragility of life forces respect for the whole person and the people who love them. A general approach to patients who are actively dying is to allow them to define what they want and need during this time. The nurse’s role

The focus is on the needs of both the terminally ill person and the entire family. This care is provided by an interdisciplinary team which includes the physician, nurse, social worker, chaplain, certified nursing assistant, and hospice volunteers. A couple of examples are pain and symptom management, emotional, psychosocial and spiritual support, funeral planning and arrangement and most crucial are bereavement services for the family and caregivers after the patient’s death.

Death is inevitable. It is one of the only certainties in life. Regardless, people are often uncomfortable discussing death. Nyatanga (2016) posits that the idea of no longer existing increases anxiety and emotional distress in relation to one’s mortality. Because of the difficulty in level of care for end-of-life patients, the patient and the family often need professional assistance for physical and emotional care. Many family caregivers are not professionally trained in medicine, and this is where hospice comes into play. Hospice aims to meet the holistic needs of both the patient and the patient’s family through treatment plans, education, and advocacy. There is a duality of care to the treatment provided by hospice staff in that they do not attempt to separate the patient’s care from the family’s care. Leming and Dickinson (2011) support that hospice, unlike other clinical fields, focuses on the patient and the family together instead of seeing the patient independent of the family. Many times in hospitals, the medical team focuses solely on the goal of returning the patient back to health in order for them to return to their normal lives. They do not take into account the psychological and spiritual components of the patient’s journey and the journey that the family must take as well. For treatment of the patient, Leming and Dickinson agree that hospice does not attempt to cure patients, and instead concentrates solely

Hospice is compassionate care provided to patients facing terminal illness or illness for which there is no cure. These patients are diagnosed with an illness from which they will never recover and usually have a life prognosis of six months or less (Hospice Foundation of America, 2014). The goal of hospice care is improving quality of life and managing the symptoms of disease and the dying process. The care hospice offers is focused on pain management and emotional and spiritual support for both the patient and family (National Hospice and Palliative Care Organization, 2012). Hospice care can be provided in many different settings, often the patient’s own home. Hospice care can also be provided in hospitals, nursing homes, long-term care facilities and free-standing hospice centers and is available to patients of all ages (NHPCO, 2012). A patient receiving care in a hospice program has a team of healthcare individuals that can consist of the patients own physician, nurses, home health aides, clergy, social workers, and speech and physical therapists (NHPCO, 2012). Usually, a care plan is developed by the hospice team and care of the patient is provided by family members with the support of the hospice staff (NHPCO, 2012). Nurses make regular visits to the patient and family and are on call 24/7. Once enrolled in a hospice program hospice covers everything that will be needed to care for you, from medications to manage pain to

Hospice crusade in the United States has advanced over the past 25 years. The focus of hospice is comprehensive physical, psychosocial, emotional and spiritual therapy in people, who are terminally ill and their families. Hospice providers are helping the quality of life by whenever they can, instead of hospitals, protecting patients treated at home from the burden and provide intervention. Hospice nurses are mainly in accordance with the 1983 Medicare Benefits Act, guidelines of the federal program that allows the patient to die in their own home with family and friends at their next offer treatment (Nurses for a Healthier Tomorrow, n.d).

    At some point in a terminally ill person 's life, there comes a time when all treatment options have been exhausted, and patient comfort is the number one priority. During this process, hospice care comes into play to ensure quality of life of a patient. Pain management and supportive services are provided to anyone who is willing by Medicare, and other government assistance programs, for individuals and families that cannot afford private home care. These services are provided by a trained group of professionals, including; Doctors, Nurses, Counselors, Social workers, Physical therapists, Volunteers and Chaplains. There are different types of hospice

I t is important that end of life care is delivered in respect of patients Autonomy, Beneficence, and in a Truthful way. In what follows I argue that we as nurses need to fulfill obligation to support and assist the dying patient and his family’s right to self-determination as it relates to end of life care. I believe that we have made headway but still have much to achieve. Education and research in these areas by and for health care workers and the general population would do much to improve the quality of end of life care.

Before beginning, I would like to preface my remarks with one disclaimer. I am currently an Assistant Professor of Medicine, on the faculty at the University of Virginia School of Medicine. Additionally, I serve as Medical Director of our in-patient hospice and palliative care unit. Moreover, I serve on the board of our local hospice organization, Hospice of the Piedmont, where I also serve as Associate Medical Director. Though my work with these organizations has greatly enhanced nd deepened my commitment to the care of the terminally ill, I in no way claim to speak for or on behalf of any of the institutions for which I serve. The opinions expressed below and in my written testimony are entirely my own.

What was once believed to be a form of neglect has resulted in a change in practice with the idea that doing less is more. Culture is an important factor in how care is rendered and thus, the limitations of palliative and hospice care lie within the desires of the family and patients. A thorough understanding of our surrounding demographics helps to ensure a seamless approach to providing care without bias or imposition of ones beliefs. However, just as with all things, providing care for the sick and comforting the dying should be rendered in moderation as to prevent the effects of burn out. Likewise, the same effects occur in the caregivers who sacrifice their responsibilities in order to care for their love ones. Finally, and with some closing thoughts, the writer wishes to express with gratitude the benefit of having taken this course to better understand oneself and others in the realm of healthcare. The lessons learned throughout have expanded this writer's knowledge and understanding of the human desire to make a connection through communication, emotion, compassion, and spiritually - the platform from which this writer wishes to continue seeking further knowledge and

Palliative care is a relatively new concept. Palliative care programs have become more numerous and better utilized since 2000 and continue to grow. It is now accepted that the palliative care model is appropriate for patients with life-limiting illnesses. Chan et al. (2013) stated that the ultimate goal of palliative care is to relieve suffering and to maximize the quality of life for dying patients and their families, regardless of the stage of illness or the need for other medical treatments (p. 133). As life-expectancy increases, there is a growing need for these services. People are living longer with chronic diseases and palliative care services can provide an extra layer of support to patients and their families. Evidence has shown that 13% - 36% of hospital inpatients qualify for palliative care services (Robinson, Gott, & Ingleton, 2014).

Dying due to an incurable illness can be devastating With responsibility of caretaking falling chiefly on the patient’s family. While dealing with the normal every day activities that families encounter, becoming a primary caregiver to the terminally ill is an emotional as well as financial burden. The ill person usually lives in the house of a family member, which forces the family to witness the person dying every day. Having to watch a person suffer in your own home is depressing to even the strongest of people and knowing there is nothing that can be done to stop their pain makes things that much worse. Studies have shown that people who receive a terminal illness diagnosis become depressed and develop anxiety. Because of the mood disorders that can

Hospice’s main focus is on the patients and their needs. As shown on www.nhpco.org, the website for the National Hospice and Palliative Care Organization, their vision for patients and families is one where individuals and families facing serious illness, death, and grief will experience the best that humankind can offer (National Hospice and Palliative Care Organization, 1). With this in mind, those who are involved with Hospice work to provide patients with relief from their symptoms and try to lift the weight off of their shoulders, also known as the Palliative Care part of Hospice. Hospice care involves a team-oriented approach, where members of the organization will work together to ensure the the patient, and their family as well, receive compassionate care (National Hospice and Palliative Care Organization, 1). This includes physical care, such as pain management, emotional care, such as relieving stress, and spiritual care. Emotional and spiritual

According to Burkhartd (), “compassion is the ability to imagine oneself in the situation of another” (p.50). Majority of the population has experienced a form of illness or another at some point in life. Previous encounters with particular situations help people to understand exactly what someone is going through. A nurse may come across a patient who is suffering from the same type of cancer that his/her grandfather once did or a child who fractured the same bone he/she did during childhood. Previous experiences don’t have to be lived to fully understand each situation, sometimes repetitious occurrences help. For example, the nurse could also understand a particular circumstance because he/she cared for many others who suffered from the same illness. It helps the nurse remember what if this were my grandfather, who was in the exact situation? What helped the most when that happened to me? These prior experiences bring about feelings of compassion and motivation to care for this patient with the best of his/her abilities. The essential nursing value of altruism also motivates people to help those in need. As a healthcare provider, it’s important to have faith in the human race and have a sincere concern for human beings. Without the concern for mankind there would be no desire to help those in

By addressing these concerns in ways consistent with the resident’s values and preferences, the care providers including the social workers can help enhance the resident’s quality of life. That is the main goal of palliative care: quality of life” (Bern-Klug, 2017).

According to the National Hospice and Palliative Care organization, in 2011, an estimated 1.651 million patients received services from hospice care, while 1,059,000 patients passed away from this form of care in the same year (NHPCO pdf, 2012). Hospice end of life cares mission/goal is to provide compassionate care for patients and their families who are living with a life limiting illness. This type of medical service gives expert medical care, pain management, and emotional and spiritual support (NHPCO, 2016). End of life care is beneficial for ones well being while they are passing away. Giving someone a peaceful and warm environment to spend their final life moments in. This form of end of life care is something that most people can relate to as many friends and family members have gone through this process. Hospice care is delivered to many patients, residents, and in general people all around the world, having many factors that go into hospice such as the requirements to receive hospice, the care team and the levels of care one receives, all of these factors are extremely important when it comes to the care for one’s life, family member, or friend.