July 2016 VOL 7, NO 6

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Learning Guide

Overview of End-of-Life Care

Lillie D. Shockney, RN, BS, MAS, ONN-CG 

Supporting advanced-stage cancer patients in preparation for end of life is perhaps the most daunting aspect of nurse navigation. Even though it is known by the treatment team that their patient will succumb at some point to the cancer and its treatment, there remains hesitancy to discuss end of life, especially end-of-life planning. The focus instead is on treating the disease. The patient, however, is more than his or her pathology.

Oncology nurse navigators, as patients’ advocates, must serve as the voice for patients when they are not able to speak confidently on their own behalf. Rather than receiving treatment for treatment’s sake, the goals of treatment must be based on what each patient’s goals are, and not anyone else’s.

Palliative care for symptom management, especially pain relief, should be offered to any patient dealing with serious side effects of their illness, whether the cancer is life-shortening or not. However, doctors commonly combine palliative care with a hospice discussion, which implies that palliative care is for the very end of life, which it should not be. Palliative care should be viewed as quality-of-life preservation or quality-of-life restoration and not be coupled with hospice services. Although always provided with hospice care, it should be initiated much sooner while the patient is still receiving treatment.

In the United States, the length of time a patient receives hospice care is only 5 days. Approximately 21% of metastatic patients will die in an intensive care unit. This is primarily because of poor or inadequate communication between the patient and the treating oncologist. Physicians are hesitant to discuss end of life out of fear that the patient will interpret such a discussion as giving up on the patient. What may be worse, however, is the patient having false hope due to poor communication. A research study conducted on solid organ tumor patients with advanced disease demonstrated that when the doctor says “I am hopeful your tumor will respond to this next treatment,” the majority of patients agree to have the treatment because they interpreted the word “respond” as meaning “cure.” Physicians are not taught to ask patients to repeat back to them their understanding of what was just said; nurses are, however. So making sure that the patient understands what to expect from the next line of therapy is critically important.

Well-meaning family members can display enabling behavior with the oncologist by going behind the scenes and asking the doctor to “not give up on their mother” and to “please give her any other treatment that is available,” even though there hasn’t been a conversation between the patient and the doctor indicating that the patient wants to stop treatment. Again, the importance of the navigator serving as the patient advocate could not be more important than at this time.

Patients also will hesitate to agree to enroll in hospice care due to fear of abandonment by their doctor and other oncology support staff, including their nurse navigator. This can easily be addressed, however, if the doctor asks the patient to allow him to continue to remain in touch with hospice staff and family members, thereby affirming that the patient is not being abandoned, although it will be hospice physicians and staff providing the lion’s share of the support and medical care. Having the patient’s nurse navigator remain in touch with the patient and the family may be one of the best ways to support a patient to embrace hospice care.

Patients need to be navigated through phases of hope. The first phase is commonly the hope for a miracle cure. The second phase is hoping for a long life with quality of life, living in harmony with their disease. The third phase is acknowledging they will have a shortened life but still hoping for quality of life for the time that remains. And finally, hoping for a “good death.” The elements of a good death include:

  • Knowing she had purpose for living, and it was valued by at least 1 other person
  • Leaving a legacy that is not related to leaving financial wealth
  • Being pain free
  • Dying with dignity in an environment of their own choosing (most want to die at home with hospice care if asked)
  • Giving forgiveness and receiving forgiveness
  • Feeling confident she will be spoken of fondly after she is gone
  • Having legal and financial affairs in order
  • Leaving no financial debt for their loved ones to pay associated with their cancer and its treatment
  • Feeling a connection spiritually to a higher power (which for some comes closer to the actual end of life)

To orchestrate a good death, which everyone deserves, takes time and cannot be accomplished in a week. It commonly takes several months. When a physician tells the patient and their loved ones that it is “time to get their affairs in order,” the physician documents it in the medical record; however, that doesn’t mean it will actually happen as no resources or instructions are provided to assist the patient with this important and daunting task. That can result in it never happening, which later can cause chaos for the family members left behind.

As the patient advocate, the nurse navigator can help support the patient by providing resources for planning legally and financially for end of life; making sure, too, that the patient’s goals are the goals of treatment; speaking with the family to diminish the risk of the family wanting to keep the patient alive but without quality of life; and discussing with the treatment team the patient’s candid discussions with the navigator about wanting to end treatment sooner versus later. Statistically, those who enroll in hospice care at home sooner live longer and with better quality of life than those who continue treatment until too ill to be given anymore.

End of life requires good planning, and those with advanced cancers deserve for such planning to be part of their cancer care. The nurse navigator can and should serve as the patient advocate to help ensure that the patient’s voice is heard; that effective communication is taking place between the patient, family, and treatment team; that palliative care is initiated early; and that steps are taken and barriers removed to help facilitate a good death for the patient.

Check your knowledge!

1. Palliative care is primarily
a. Symptom management to restore or preserve quality of life
b. Provided when hospice care is initiated for the patient
c. Given in the home setting
d. Focused on pain control and not on other side effects or symptoms

2. The average number of days a patient receives hospice care in the United States is:
a. 5
b. 10
c. 15
d. 30

3. If a patient is asked where they would prefer to die, the most common answer given is:
a. In the hospital
b. In a nursing home
c. At home with hospice
d. At a hospice facility

4. The primary reason patients do not want to enroll in hospice care is:
a. Believing a miracle can still happen
b. Fear of abandonment by their oncologist and treatment team
c. Fear of death
d. Fear of pain

5. The primary reason for patients not receiving the care they desire and need at the time of end of life is due to poor communication.
a. True
b. False

Answers
1, a; 2, a; 3, c; 4, b; 5, a.

Resources

de Graaf E, Zweers D, Valkenburg ACh, et al. Hospice assist at home: does the integration of hospice care in primary healthcare support patients to die in their preferred location – a retrospective cross-sectional evaluation study. Palliat Med. 2016;30:580-586.

Gaertner J, Siemens W, Antes G, et al. Specialist palliative care services for adults with advanced, incurable illness in hospital, hospice, or community settings—protocol for a systematic review. Syst Rev. 2015;25:123.

Hack TF, Chochinov HM, Hassard T, et al. Defining dignity in terminally ill cancer patients: a factor-analytic approach. Psychooncology. 2004;13:700-708.

Hawthorn M. The importance of communication in sustaining hope at the end of life. Br J Nurs. 2015;24:702-705.

Meier EA, Gallegos JV, Thomas LP, et al. Defining a good death (successful dying): literature review and a call for research and public dialogue. Am J Geriatr Psychiatry. 2016;24:261-271.

Shockney L. Fulfilling Hope: Supporting the Needs of Patients with Advanced Cancers. Hauppauge, NY: Nova Science; 2014.

Sullivan MD. Hope and hopelessness at the end of life. Am J Geriatr Psychiatry. 2003;11:393-405.

Vehling S, Kamphausen A, Oechsle K, et al. The preference to discuss expected survival is associated with loss of meaning and purpose in terminally ill cancer patients. J Palliat Med. 2015;18:970-976.

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