End-of-Life Concerns of Terminally Ill Patients

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A Description of End of Life Concerns

Death is an inevitable occurrence. While everyone is bound to die, one’s time of death is made possible by human agencies. In the past, it was common and natural to let death set in when it does. Presently, near-death patients or their surrogates can exert control about how and when they want to die. For instance, they can choose to delay death by resuscitation or fasten death by not taking treatments, or by making decisions that end their life.

Therefore, end-of-life concerns constitute planning of care towards and after one’s death. It includes talking to people that are close to an individual like one’s family or one’s physician (Center for Bioethics, University of Minnesota, 2005). Such plans normally express one’s preferred treatment and care, as well as a source of information for families and doctors when the patients reach a point when they are no longer able to make decisions.

The legal and ethical concerns that normally surround the topic of end of life revolve around patient interests. The principle of autonomy refers to a patient’s ability to express their desire or interest in matters that directly affect their health. Thus, autonomy requires that nurses and doctors show consideration for patients with the ability to make decisions, as well as for those lacking this capacity (Mohanti, 2009).

Therefore, the relatives of patients with an ability to make decisions are obligated to respect their decisions, as well as that of health care professionals that effect such decisions on behalf of those lacking the ability. The principle of autonomy supports that an individual should be able to make their own decisions concerning the kind of medical care they desire or otherwise. Not complying with such decisions as effected by an individual would amount to an invasion of one’s bodily integrity, limiting their ability to propel their lives as they so desire, in tandem with their interests, values, and preferences.

Despite suffering a terminal illness that is a sure sign of death, nurses and physicians are medically and ethically bound to offer pain management remedies. Terminally ill patients are most likely to suffer aggravated pain as they near the end of life. A common pain-relieving method is through the administration of pain relievers and bed rest. Nonetheless, a key ethical dilemma that surrounds palliative and hospice care systems from offering pain-relieving medication to terminally ill patients (Niemira & Townsend, 2009).

However, the use of medication is likely to result in ethical dilemmas about matters of autonomy, the treatment of symptoms and possible drug addiction from the administration of narcotics. It is used to relieve severe pain and address the problem of short breath. However, physicians normally prescribe the medication to terminally ill patients fearing that the right dosage may lead to respiratory depression, which may lead to their prosecution should it occur.

There is also the issue of whether to withdraw or withhold medical treatment. Medical interventions can prolong and save a patient’s life (Woo, Maytal & Stern, 2006). However, both the patients and their loved ones have to make tough decisions like whether to a given undergo treatment and whether it would be appropriate to withdraw treatment at a given time. Resuscitation, mechanical ventilation, nutrition and hydration, antibiotic treatment, dialysis among others are some of the ethical and emotional draining decisions to be made.

Owing to the numerous ethical concerns that are tied to treatments for terminally ill patients, proponents of good deaths encourage the preparation of advance directives. These documents are used by patients to relay their health care wishes when they near death. While the documents honor autonomy and respect the choice made by individuals, their application may also lead to the rise of ethical issues and concerns (Woo et al., 2006).

These are: they may act as a hindrance to effective patient care owing to the influence exerted on the health care providers. Also, it is not a guarantee that the use of given treatment could result in incapacitation or disability, yet most people scared of being incapacitated or disabled love to undertake advance directives towards care.

Discuss the individuals that are impacted by this issue (i.e.- patients, family, community, advanced practice nurse, etc.)

Patients are the primary individuals that are affected by end of life concerns. Pain and fear of pain are a primary concern among dying patients who consider any possible alternatives to avert such pain. Patients suffering from terminal illnesses like cancer fear that their pain may progress for a long time without ablation (Woo et al., 2006). This is, however, a challenge when dealing with older patients as they are unable to differentiate old age pain and symptomatic pain. Thus, it is necessary that they are closely monitored and their type of pain evaluated.

Patients in their end of life are most likely to suffer depression. One study has reported that over 60% of patients suffering from cancer suffer from psychological distress, while 50 % of other patients suffering from the same quality to be diagnosed from physiatrist disorders (Woo et al., 2006). Depression, a common illness in cancer patients is also a positive contributor to suicide.

The third impact of the end of life concerns to patients is their ability to cope with the situation. Patients approaching their end of life find it difficult to accept that they are about to die and that theirs is an illness that is neither manageable or curable. While some patients can positively cope with their illness, by demonstrating awareness, optimism, and resourcefulness, others have poor coping mechanisms exhibiting defense as a response to the diagnosis they receive.

Dignity is another issue that patients with terminal illnesses have to struggle with. Most patients near death are determined to die a dignified death. For such patients, dignity refers to their ability to maintain autonomy in decision making and independence in effecting them. Thus, they still want to be in control of their lives and make decisions about how they should die should they feel that they are not able to hold on any longer. Thus, most patients near death prefer to die when they are still able to exercise their functional capacity when they can utilize their cognitive abilities when they can manage disease symptoms as well as be in a good psychological state.

While the patient endures most of the pain as a result of the disease they duffer, the loved ones and relatives to the dying patient suffer the most end of life concerns. First, they are obligated to make critical decisions in support of their loved ones, most of which are very painful for them to bear. It is quite difficult for one’s loved ones to decide on whether to withdraw medical care or retain it when their loved one is on the brink of death. Further, should they agree to the termination of treatment which may result in the death of their loved ones coping with grief becomes the hardest struggle. Accepting that their loved one is dead is quite hard to come by.

Besides the patients and their relatives, nurses and clinicians that oversee the treatment of these individuals are also confronted with a myriad of challenges that impede their ability to offer the best care. One such impact is that it tests the nurse’s ability to engage in sensitive and difficult conversations that are not taught in medical school.

The topic of end of life care is hardly handled in medical school. Pedagogical approaches to learning are absent in medical instruction. Most surgical and medical residents who are responsible for eliciting treatment to end of life patients and having difficult conversations with their families tend to be inadequately prepared for this matter (Woo et al., 2006). Thus, end of life care receives minimal instruction attention as compared to other invasive medical procedures like thoracocentesis, among others.

Despite the high requirements that nurses are expected to deliver and oversee when handling patients in their end of life stages, they are poorly compensated for their input. Insufficient compensation is an issue that has for a long time received little attention among caregiving professionals that tends to end of life patients. While these professionals are necessitated by the altruistic need to ease the suffering of their patients, their financial realities are poor (Childress & Beauchamp, 2001).

Owing to the kind of care required by these kinds of patients and the tasking need to engage their relatives, it is only reasonable to assume that this line of care will soon run out of physicians that are willing to spend so much time with a patient in return of minimal pay. A study of the Medicare resource-based value scale reveals that physicians dealing with invasive procedures are better remunerated as compared to their counterparts offering end of life care. Therefore, such a discrepancy between the two lines of service may cause resentment to those caring for end of life patients, as well as the need to discourage others from joining their field.

While the justification could be that invasive procedures are technical and demand a lot of time, it should also be noted that the end of life procedures like evaluation and management is time-consuming too. For instance, the 2004 work model value analysis for procedures and cognitive work revealed that the number of relative units present in a brain magnetic resonance image is similar to that of 25 minutes of counseling (Woo et al., 2006). Thus, while physicians at the end of life care unit are discriminated pay wise, their job is equally important as that of their colleagues in invasive procedures.

Further, the issue of end of life is bound to cause anxiety and distress among physicians and nurses caring for the patients owing to a personal discomfort with death. Even though physicians and nurses have undergone 7 to 14 years of training in science and technology, they tend to be uncomfortable when they directly have to deal with matters of death (Woo et al., 2006). Such are issues like the spiritual and emotional needs of their patients as well as that of their families that tend to arise during the end of life.

Advanced practice nurses that are caring for these patients are faced with numerous questions like invasive questions like how well the patient is sleeping, whether they are eating, rather than questions that can be directly answered by the patients like how are you, what would you like to eat and so on. Further, this area of care arises emotions in the nurse as they can relate and identify with the patient’s conditions, thus, minimal professionalism is at play.

Commonly, these nurses will start to become anxious about the subject of death because of their constant interaction with dying patients. This may also remind them of their won relatives that have passed on, causing them a strong attachment with their patients. Therefore, when the patient eventually dies, a physician may feel that they failed to deliver their responsibilities.

Analyze ways that the advanced practice nurse can help to resolve this concern and state recommendations for practice

Even though nurses are generally tasked with the responsibility of articulating the advance directives to relatives, they lack training and knowledge to hold such sensitive discussions. A recommendation for practice would be to ensure the development and structuring of programs that necessitate clinicians and health care systems to carry out advance care planning with their patients and relatives so that they are better positioned to understand their available options for end of life care. To elicit immediate effect and change, nurses can be taught about the Five Wishes Document.

The document can be obtained at any Ochsner facility. The use of the document is to express one’s wishes when they are confronted with the end of life decisions, yet unable to speak (Hebert, Moore & Rooney, 2011). It deals with an individual’s personal needs ranging from emotional, medical, personal and spiritual preferences.

After all these needs have been documented, it also allocated a medical power of attorney, one’s desired comfort level, a living will and a section that explains emotional and personal preferences towards and after death. Even though nurses are required to oversee the delivery of end of life wishes as requested by the patient, the nurses must be able to initiate the difficult discussion with their patients (Hebert et al., 2011). This will ensure an understating of the disease, as this will foster recommendations for care in tandem with the patient’s values.

Conclusion

End of life concerns impose an ethical challenge to clinical caregivers. Granting a patient’s request to accord them a dignified death implies keen consideration of ethical principles of autonomy, maleficence, beneficence, truthfulness, justice, and fairness. However, this may at times become a challenge in case the patients relative are opposed to the decision or when the decision hinders the medical practitioner from fulfilling their professional obligations. Therefore, nurses and medical practitioners must advise their patients on the need for an advance directive to solving such ethical dilemmas.

References

Center for Bioethics, University of Minnesota. (2005). End of life care: an ethical overview. Web.

Childress, J. F., & Beauchamp, T. L. (2001). Principles of biomedical ethics. Oxford, UK: Oxford University Press.

Hebert, K., Moore, H., & Rooney, J. (2011). The nurse advocate in end-of-life care. The Ochsner Journal, 11(4), 325–329.

Mohanti, B. K. (2009). Ethics in palliative care. Indian Journal of Palliative Care, 15(2), 89.

Niemira, D., & Townsend, T. (2009). End-of-life decision-making. In Handbook for Rural Health care ethics: a practical guide for professionals. Hanover, NH: Dartmouth College.

Woo, J. A., Maytal, G., & Stern, T. A. (2006). Clinical challenges to the delivery of end-of-life care. Primary Care Companion to the Journal of Clinical Psychiatry, 8(6), 367–372.

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