How To Deal With Terminally Ill Patient Essay

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(Schapira, 2010) It is important for patients to have all the facts in order to accept and prepare for death. Another area not always communicated well has to do with advance care planning. Many patients do not learn about options or talk about end of life issues until it is very late. Studies have shown that younger doctors are more likely to initiate conversations about end of life care options. (Pahwa, Babu & Bhatnagar, 2005) Our society finds it difficult to talk about dying and euphemisms are the norm. It is typical for both doctors and patients to be hesitant to initiate a discussion on dying. Focus instead is often more often placed on interventions and actions for managing symptoms. This avoidance can leave patients and their families unprepared for the inevitable death. (Schapira, 2010) It also often results in requests for therapies which may be excessive, costly and even painful in the hopes for a cure. One study demonstrates that when patients are aware that they are terminally ill, the majority are able to reach a state of peacefulness and also exhibit lower levels of distress. (Ray, Block, Friedlander, Zhang, Maciejewski & Prigerson, 2006) It is also important that family members are willing to discuss end-of-life options with their loved ones. According to elderly patients, they are most often the ones who initiate these conversations How To Deal With Terminally Ill Patient Essay

When we experience pain, our brain is actually telling us that we are feeling pain. There are sensory receptors on our skin that is responsible for sending signals to nerve fibers which is then accounted for transmitting messages to the spinal cord and onto the brainstem where it finally distributes to various parts of the brain where the sensation is registered as pain. To briefly put it, pain is a sensorial-cerebral event. This is usually why sometimes we have a delayed reaction to a cut or a burn and also why we can take medication to alleviate pain. Though suffering and pain are nearly synonymous, suffering is actually the psychological response to the feeling of pain. As such, one’s definition of suffering vary from one another and while pain can usually be treated, suffering cannot be mitigated by medication. How To Deal With Terminally Ill Patient Essay
If this is so then it is not possible for someone to know exactly what a terminally ill person is feeling. Besides, what right does a person have to decide that a terminally ill patient has to suffer for weeks on end in agony instead of deciding to die, and why should anyone have that right but not the person itself?

When a person is diagnosed with a terminally illness and is given an expectancy of six months or less to live, it is time to concentrate on the type of care will need. Many times a person and their family will turn to hospice care. The meaning of hospice is to provide care to a person who is terminally ill. Hospice does not speed up or postpone death. Hospice is a type of care that provides services to improve the quality of life for the patient and family. Hospice exists in the hope and belief that, through proper care and the encouragement of a caring and sensitive team, patients and their families may be free to achieve some level of mental and spiritual preparation for death that is comfortable to them. The goal is to help …show more content…
Most patients receive hospice care at home, but this care can also be at other settings such as a hospital, long-term care homes with hospice units and freestanding hospice units. Death is one of the most fear-provoking and confusing times a person can go through. Watching a loved one pass away is also one of the most difficult hardships a person can encounter. People sometimes presume that a terminally illness is a time of pain and the only thing that they can do is mourn and watch their love one fade away. Although dying from a terminal illness does not have to be full of pain and suffering. Hospice brings new hope and meaning for terminally ill people and their families. Hospice gives support and care for the person in the last phases of incurable disease so that they can lice as fully and comfortable as possible in their last days. How To Deal With Terminally Ill Patient Essay

Palliative Care Nursing
Cari Pusateri
Breckinridge School of Nursing
ITT Technical Institute

NU 1320
Patricia Safford
July 21, 2014
Palliative Care Nursing Dealing with the symptoms of any painful or serious illness is a difficult thing for patients and families to deal with. There is a special type of care available to patients with serious and terminal illnesses that focus on making the patient comfortable throughout the course of their illness, no matter what the final outcome. This type of care is known as palliative care, and it is a central part of treatment for serious or life threatening illnesses. It does not replace the primary care of the patient, but works together with the primary care a patient receives. It is provided by a team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and can be provided along with curative treatment. The primary goal of palliative care is to prevent and relieve the pain and other symptoms that a patient experiences and improve the quality of the patient’s life. How To Deal With Terminally Ill Patient Essay
DEFINITION
The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” (WHO, 2014). In a general sense, it alleviates symptoms, regardless of the hope of a cure. For example, palliative care is used to alleviate the side effects of curative treatments such as the nausea caused by chemotherapy. How To Deal With Terminally Ill Patient Essay

APPROACH Palliative care is a team approach to patient centered care. It is provided by a team of specialists that may include palliative care doctors, nurses, social workers, chaplains, pharmacists, nutritionists, counselors and any other professional that the patient or family may find beneficial. This team of professionals spends as much time as necessary with the patient and families in order to support them and their other doctors every step of the way. They not only find effective ways to control the patient’s symptoms, but also help patients and families understand the treatment options and goals. According to the article, Knowledge of Palliative Care, nurses serve as the “gateway” to palliative care because they are the ones who can identify and suggest referrals of patients who would benefit from this type of care (Autor, Storey & Ziemba-Davis, 2013). They play a vital role because they are the ones who advocate for the patients and families and provide the direct care on a continuous basis. How To Deal With Terminally Ill Patient Essay

Death often comes after advanced age or serious illness. End of life is defined as ‘the time period during which the healthcare providers would not be surprised if death occurred within about 6 months (APA, 1). Most deaths are of the older age group (above 65 years) or those who are terminally ill (APA, 1). End of life care issues can be simple or complex and may range from legal, ethical, psychosocial, practical, spiritual, and medical aspects and even personal issues of the dying person (APA, 2). In literature, broadly discussed are the ethical and legal issues. In this review, we will learn about the issues that many face – including the patient, family, care giver, and the physician in dealing with end of life care. How To Deal With Terminally Ill Patient Essay
The age group of above 65 years is the age group in which about 70% of deaths occur. According to Foley (1995), older individuals want discussions, understanding, information, and a chance to guide their decisions on where they want to be cared in terminal days of their life – at their residence or in the hospital? About 65% of US citizens die in hospitals and 17% die in institutionalized settings (Foley, 163; Isaacs et al). Foley’s study showed that about two third of older individuals had pain in their last month of life. Later, Tulsky et al’s study showed that when discussing about good end of life with patients, the physicians did not consider patient’s values or preferences (Tulsky et al, 441).
During the period of end of life, patients face many personal issues. They particularly fear that their sypmtoms, pain, anxiety, emotional suffering, and family related concerns, all will be ignored. Many fear that their wishes or last wishes will be disregarded and they will face death in miserly and will be all alone at the time of dying. These factors are responsible for anxiety and depression (APA, 2).
Dying people frequently have to make a choice on the desired involvement of their family. They may like to make legal decisions about their will. They may have to make a choice on how they will like to spend their remaining time and energy. Some may want to spend time in doing a final review of life or to deal with some unfinished works (APA, 2). How To Deal With Terminally Ill Patient Essay
Dying patients have the option of using hospice care, which is a holistic and philosophical approach to end of life care. It brings all healthcare professionals like doctors, nurses, social workers, and other professionals to work together as a care team (NHPCO). Those who work around the idea of improving care for dying patients try to determine what is required for a “good death” (Steinhauser, 825; Singer, 163; Steinhauser, 2476). Common elements of “good death” identified in the literature are: adequate pain management, symptom control, avoidance of prolonged dying process, adequate mental preparation for deaths of both patients and his loved ones, clean communication of patient’s, physician’s, and family’s decisions, and not being alone at the time of death (Steinhauser, 825; Singer, 163; Steinhauser, 2476). Thus, the team’s objective is to make the patient as relaxed as possible during the terminal days of his life. How To Deal With Terminally Ill Patient Essay
According to few reports, many Americans who are nearing the last days of their life are not able to receive appropriate hospice care (Minnesota partnership, 34). At some places in US, the residence location may be an obstacle to receive hospice care. For e.g., the rural Minnesotans have less access to hospice care compared to urban residents (Minnesota partnership, 34). The Minnesota Commission on End of Life Care found that very few physicians and nurses in Minnesota were certified in hospice and palliative care and even the urban healthcare professionals were not adequately knowledgeable on disease and pain management and issues related to end of life (Minnesota partnership, 44).
There are governmental limitations on reimbursements to hospice care organizations for Medicare patients. Hospice effectiveness is also limited due to difficulty in accurate prognosis (Brown, 206-208). To add to this, many hospice programs are seen to put additional limits on patients they accept, such as requiring patients to sign a do-not-resuscitate order or to forgo specific treatments (Jennings, 3). How To Deal With Terminally Ill Patient Essay
According to National Hospice and Palliative Care Organization, most of the hospice patients are paid for by the Medicare. The Medicare policy requires that the patient should have a time period of six months or less to live before he/ she can sign up or enter into a hospice care facility (NHPCO). Medicare then pays a specific amount to the hospice program irrespective of how much or how little it costs the hospice program to care for the patient. The hospice then provides all the required care including prescription drugs. The limitations set by Medicare of prognosis of less than six months to live or amount of daily payment may prevent some patients from entering hospice (NHPCO). However, if government policies are changed and the length of time people receive hospice care is increased, it could benefit many and become widely available and acceptable by patients and families too.
According to study by Vig et al the reasons why patients did not enroll themselves for hospice care were quite a few, such as patients/ family not ready for enrollment, hospice specific issues (different definitions of eligibility criteria), and concerns about continuity of care (Vig, 1009) How To Deal With Terminally Ill Patient Essay

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A study by Kreling et al on focused on determining why hospice use is low in Latinos as compared to non-Latinos. The study found that there were differences in care giving and decision making, which were influenced by culture. Cultural values of family centered system, secrecy of prognosis, denial, all influence the hospice decisions. A significant issue particularly found out in this study was the physicians did not understand how to discuss hospice with a patient or his family who preferred not to discuss terminal life (Kreling, 427).
In medicine, usually legal issues arise in any discussion of ethical issues. However, there are areas of conduct that the law cannot address. Taking the help of law to dissolve disputes in end of life cases is often a slow and can be an expensive process, and is rarely necessary (EPEC). Informed consent is the basic ethical and legal requirement for all medical interventions. Consent must involve understanding; it should be voluntary and free of coercion (EPEC). It is a process of discussion and shared decision making. Although traditionally, decisions with respect to end of life care lied in the hands of the patients, their families, and the treating physician, actually decisions are significantly determined by external constraints by insurance carrier, managed care organizations, and reimbursement policies. According to The Education for Physicians on End-of-life Care curriculum, physicians and the patient must be aware of the fact that direct responsibility for informed consent falls on these organisations (EPEC). How To Deal With Terminally Ill Patient Essay

Some important legal principles in end of life care are (EPEC):
1. Patients with decision-making capacity can deny unwanted medical treatment, even though it can result in death.
2. Authorized surrogate decision makers may make decisions in cases of patients who lack capacity to make decisions
3. There is a legal consensus that both withdrawing and withholding treatment can be justifiable
Though there is a broad agreement on much of end of life care and treatment, some difficult legal issues like futility remain unresolved (EPEC, 12). In addition, if the physician, the patient is receiving treatment from, works in a managed care organization that has set limits on care that the patient or family disagrees with, the then physician is in a dilemma and will have to choose to advocate for one party over the other (EPEC, 12). The physician may also receive certain incentives or disincentives to make decisions. If the treating physician seeks help of a legal counselor, it has to be noted that that the legal counsel’s primary job is to protect the client from legal liability and not necessarily to facilitate ethical medical practice (EPEC, 12). How To Deal With Terminally Ill Patient Essay
In the US, physicians treating terminally ill patients sometimes fear litigation and this fear may prompt unnecessary interventions or stop them from being completely ethical with patients. In one study, 93% of clinicians reported practicing defensive medicine. They performed testings’ beyond what they felt was clinically necessary (Emaneul).
A study by Sachs, Shega, and Hayley published a decade ago on terminally ill dementia patients showed that the communication and functional problems that dementia patients have, makes it difficult to provide palliative care to this population (Sachs, Shega, & Hayley, 19). According to the authors, assessing pain in cancer patients is straightforward, but not in dementia patients since they have difficulties in recalling and expression. The sypmtoms that include anxiety, depression, and hallucinations are difficult to manage and pose a significant challenge. Medicare policies create discontinuities in caring for such dementia patients who experience acute illness and chronic declination (Sachs, Shega, & Hayley, 1057).
Overall, from the literature review, we can understand that caring for patients when they are in their terminal days of their life is challenging to family, the care givers, and the treating doctors. It requires the patient to be considered as a whole and the consideration of social, economic, legal, and institutional circumstances. How To Deal With Terminally Ill Patient Essay

Is there anything that can work?
Many don’t know how to deal with end of life issues. Perhaps, who can help is an expert such as a clinical or counseling psychologist who is trained in palliative care (APA, 2). He can help in identifying resources (home care, spiritual support, hospice care, and pain management). He can help the dying person in improving communication and explaining end-of life choices. The psychologist can help people understand what the doctor is wanting to communicate and help them put their choices on paper, including decisions about breathing on ventilator or feeding tubes or restarting the heart (CPR). Psychologists can also help in reducing the depression, anxiety, and other mental health distress (APA, 2). Besides, improvement in government policies can offer great help to those seeking hospice cares (NHPCO).
In summary, end of life care is for people who are approaching death and are in terminal days of their life. Care, at this stage, is aimed at making death process as smooth as possible and making them live well till the last day. As discussed above, there are certain issues in making this possible for the patients as well as bringing relief to their family. Probably, every one, right from the patients themselves, the families, the care givers, the treating physicians, and other healthcare professionals need to contribute in making the last days as peaceful as possible. According to fact sheet on ‘End of life care’ by the American Psychological Association, an improvement in the education of healthcare providers, their communication skills and cultural sensitivity, conducting more research around this issue, and creating governmental policies that improve end of life care are recommended (APA, 2). How To Deal With Terminally Ill Patient Essay
We also read that many patients are not willing to enroll themselves in hospice care for various reasons. Physicians can probably involve themselves in discussions with the patient and families, try to understand the reasons behind it, and then perhaps respond with proposed strategies.
Above all, a good communication between the patient and his healthcare professional is essential. Communication builds trust, and if there is break in communication, mistrust and conflict can arise. Healthcare staff needs to educate themselves on the way of communication to maximize understanding.
Thus, providing a good quality end of life care to patients is a challenge, it can still be met with appropriate interventions. How To Deal With Terminally Ill Patient Essay

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