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.
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).
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.
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).
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)
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).
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).
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.
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).
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.
References:
Valente, Sharon. “Fact Sheet on End-of-Life Care”. American Psychological Association. N.d.
Foley, K.M. “Pain, Physician assisted dying and euthanasia”. Pain. 1995. 4, 163-178.
Isaacs, S.L. & Knickman, JR. “To improve health and health care.” 1997. San Francisco, CA: Jossey Bass.
Tulsky, J.A., Fischer, G.S., Rose, M.R., & Arnold, R.M. “How do physicians communicate about advance directives”. Annals of Internal Medicine, 1998, 129, 441-449.
The National Hospice and Palliative Care Organization website online at www.nhpco.org.
Steinhauser KE, Clipp EC, McNeilly M, et al. “In search of a good death: observations of patients, families, and providers.” Annals of Internal Medicine, 2000; 132:825-832.
Singer PA, Martin DK, Kelner M. “Quality end of life care: patient’s perspectives.” Journal of the American Medical Association, 1999; 281:163-168.
Steinhauser KE, Christakis NA, Clipp EC, et al. “Factors considered important at the end of life by patients, family, physicians, and Other Care Providers.” Journal of the American Medical Association, 2000; 284:2476-2482.
Commission on End of Life Care Final Report. Minnesota Partnership to Improve End of Life Care and the MN Dept. of Health. January 2002. p.34. Online at www.minnesotapartnership.org.
Commission on End of Life Care Final Report. Minnesota Partnership to Improve End of Life Care and the MN Dept. of Health. January 2002. p.44. Online at www.minnesotapartnership.org.
Brown GM. “This porridge is too thin”. Cambridge Quarterly of Healthcare Ethics, 1998, 7, 206-208.
Jennings B. Rundes T. D’Onofrio C. et al. “Access to hospice care: expanding boundaries, overcoming barriers”. The Hastings Center Report, 2003; 33(2), S3-7. Online at http://www.thehastingscenter.org/pdf/access_hospice_care.pdf.
National Hospice and Palliative Care Organization on the internet at http://www.nhpco.org/i4a/pages/index.cfm?pageid=3283&openpage=3283.
Vig, E., Starks, H., Taylor, J. S., Hopley, E., Fryer-Edwards, K. “Why Don’t Patients Enroll in Hospice? Can We Do Anything About It?” J Gen Intern Med, 2010, 25 (10), 1009 – 19.
Kreling, B., Selsky, C., Perret-Gentil, M., Huerta, E., Mandelblatt, J. “The Worst Thing About Hospice Is That They Talk About Death”: Contrasting Hospice Decisions and Experience among Immigrant Central and South American Latinos to US-born White, Non-Latino Cancer Caregivers. Palliat Met. 2010, 24 (4), 427 – 434.
Emanuel, LL., von Gunten, CF., Ferris, FD. “The Education for Physicians on End-of-life Care (EPEC) curriculum”, 1999.
Emaneul, E. (2011) “Legal aspects of end of life care”. Wolters Kluver Health. Online: http://www.uptodate.com/contents/legal-aspects-of-end-of-life-care; Accessed: 22nd April 2013.
Sachs G, Shega J, Hayley D. Barriers to Excellent End-of-life Care for Patients with Dementia. J Gen Intern Med. 2004 October; 19(10): 1057–1063.
