The care of a person with cancer starts sometime after symptoms begin and a diagnosis is made, and it continues either until the patient is in remission and has sufficient follow-up to declare that there is a cure or until the patient has died and the family is in bereavement. (Refer to the PDQ summaries on Last Days of Life and Grief, Bereavement, and Coping With Loss for more information.) Ideally, end-of-life decisions are made early in the process, before there is a need. Although these issues are not pleasant or easy to think about, they are often a part of an individual’s philosophical, moral, religious, or spiritual make-up. If feelings about end-of-life issues are a part of a person’s life-fabric, they need to be made known in order to be carried out. Because of the sensitive nature of these decisions, this is not always the case. A conspiracy of silence often exists that delays or prohibits discussions about these issues. Patients do not want to worry their families; families are afraid that if they initiate discussion about the topic, the patient will become depressed (refer to the PDQ summary on Depression for more information) or give up; physicians often feel uncomfortable with these discussions and do not want to worry the patient or family. People often believe that there is plenty of time to talk about such issues; however, when the time for end-of-life decisions comes, they are not able to make these decisions, the issues remain unresolved, and the decisions are made by people who may not know the patient’s wishes. Pediatric oncologists report significant anxiety discussing death with parents and families, with 47% waiting for the family to initiate the topic of advance directives.
A first step in raising the issue with the patient in end-of-life decision-making is completion of the Health Care Proxy (HCP) form (e.g., a power of attorney for medical decision-making form or a medical power of attorney form). These forms vary by state, but the intent is the same. The HCP allows a patient to appoint an individual to make medical decisions in the event that the patient is no longer able to do so. Although the form may not need to be notarized, it must be witnessed by two observers. In some states, the advantage of an HCP over a living will is that in the HCP, the individual does not have to indicate exactly which decisions should be made but instead says that the proxy “knows what I would want” under the circumstances.
A living will or advance directive is similar to the HCP in that it allows a person to declare in a more detailed fashion (a written statement) his or her philosophies regarding medical care, nutrition, and other medical issues, so that physicians and health care institutions can best carry out these wishes. Living wills are not available or legally recognized in all states; therefore, legalities in different locales should be explored.
Do Not Resuscitate (DNR) orders instruct physicians and other health care providers that a patient is not to undergo cardiopulmonary resuscitation (CPR) in the event of cardiac or pulmonary arrest. Physicians may recommend a DNR order when CPR would be considered medically futile and ineffective in returning the person to life. A patient may also request a DNR order when CPR is not consistent with his or her goals of care. It is advisable for a person who has clear thoughts about these issues to initiate conversations with appointed health care agents (in the outpatient setting) and to have forms completed as early as possible (e.g., before hospital admission) instead of when the person loses the capacity to make such decisions. Although persons with end-stage disease and their families are often uncomfortable bringing up these issues, physicians and nurses can tactfully and respectfully address these issues appropriately and in a timely fashion. Advance directives are useful only if they are used as a basis for communication between patient and physician, not as a substitute for communication. A survey of 125 family proxies of patients who died found that 81% of patients completed advance directives, but only 57% made plans with their doctors to ensure that their directives were followed.
With the advent of the hospice movement and the passing of the Hospice Medicare Benefit Act (1983), programs are available to facilitate the care of terminally ill individuals who choose to die at home. Some states (e.g., New York) have DNR forms available for individuals wishing to die at home, thus protecting them from mistakenly being resuscitated should the situation arise. These advance directives are signed by the patient’s physician—and also, in some cases, by the patient—and indicate the patient’s wishes and intent not to be resuscitated. Whether a patient is being cared for in the home, the hospital, hospice, a nursing home, or elsewhere, these issues are relevant and important to address.References
- Hilden JM, Emanuel EJ, Fairclough DL, et al.: Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol 19 (1): 205-12, 2001. [PUBMED Abstract]
- Bakitas M, Ahles TA, Skalla K, et al.: Proxy perspectives regarding end-of-life care for persons with cancer. Cancer 112 (8): 1854-61, 2008. [PUBMED Abstract]