The Dying Patient: Choices, Control, and Communication

In the United States, more than three-fourths of all deaths are caused by chronic diseases such as heart disease, cancer, stroke, chronic obstructive pulmonary disease, and dementia.¹ While the health care system has helped increase survival in patients afflicted with these conditions, it has not had the same success in providing support and comfort to reduce suffering (TABLE 1). Furthermore, the system has not assured successful follow-through of a patient's previously stated wishes or adequately promoted advance-care planning.¹

Although the universal factor in all death is ultimately loss of oxygen, the cause of death may be due to a variety of diseases and disorders; with or without disease, however, the body continues to age and death is inevitable.² Author, surgeon, and professor of medicine Sherwin B. Nuland described in his book How We Die the following characteristics of certain universal processes all individuals experience as they die: "the stoppage of circulation; the inadequate transport of oxygen to tissues; the flickering out of brain function; the failure of organs; the destruction of vital centers."² Nuland states that while the above processes are universal, each death is a story as distinctive as the face shown during our lives, and choices can be made allowing each of us to have our own death.²     

Culture Matters in Response to Dying

According to Munoz and Luckmann, while death is universal, responses to death and dying (TABLE 2) are developed by cultures of people with their own set of beliefs, mores, norms, standards, and restrictions.³ People's responses to death fall into three general categories: acceptance of death (viewing death as inevitable and as a natural part of the life cycle); defiance of death; or denial of death--refusing to confront death and attempting to protect themselves from it while viewing death as an abnormal part of the human experience.^3,4 Health care providers should have a heightened awareness about the variations in perception, acceptance, participation, and family relations regarding the dying patient.  

Patient Control in Decision Making 

Patients should be made aware that they can participate in their end-of-life care in two distinct ways: by actively making decisions at the end of their life and by making decisions about how they believe they would wish to be cared for based on a hypothetical scenario of impairment.⁵ The patient should understand that while his or her health care provider may strongly disagree with or object to the patient's decision to refuse the plan of care, the patient's decision is constitutionally protected.³ The Patient Self-Determination Act (PSDA), passed by the U.S. Congress in 1990 and effective since December 1, 1991, guarantees patients the right to refuse treatment without giving reasons.³ The PSDA also provides a guarantee, through the use of advance directives (living will or durable power of attorney), that patients have the right to make decisions about their care in advance should they become unable to speak for themselves.^1,3,6

The living will allows a patient to explicitly denote wishes regarding the delivery of health care when the patient can no longer speak on his or her own behalf. The living will usually addresses extraordinary actions to sustain life and the question of resuscitation; it may also address hospitalization and the use of life-sustaining interventions, including parenteral and tube feeding and the use of antibiotic therapy.⁵ A durable power of attorney for health care authorizes a specific individual (e.g., spouse, adult child), referred to as a health care agent or health care proxy in some states, to make decisions regarding health care on behalf of the patient who can no longer speak for himself or herself.¹ Advance directives are required to be solicited when a senior is admitted to a health care facility.⁵ While some ethicists view advance directives as rationing of care, defenders of advance directives view it as an opportunity for patient autonomy.⁵

Preparing advance directives often helps families have a conversation with a patient about his or her wishes regarding end-of-life-care. This process enables the patient to retain control over the decisions that may confront patients even when they are mentally incapacitated.¹ Furthermore, it removes uncertainty and potential anguish that a family caregiver may experience in having to make end-of-life care decisions for a loved one without the clarity that an advance directive provides. Even with advance directives in place, it is advised that one family member be designated as the spokesperson so that communication between the family and health care providers is clear and efficient.¹  

Communicating With and Assisting Patients in Pain

For patients living with a life-threatening chronic illness, pain is a common symptom, especially for individuals very near the end of their life.¹ Health care professionals should understand that personal, social, and cultural experiences influence a patient's definition of pain, health, and illness, and responses to pain vary among individuals and cultural groups.³ A patient's reaction to pain is influenced by his or her individual perception of it, and the perception of pain reflects his or her attitude toward pain and characteristic way of responding.³ Not only do expressions of pain (e.g., appropriate verbal behavior, body language) vary from culture to culture, but they vary from individual to individual within a culture.³ While men demonstrate greater stoicism than women, data indicate that stoicism decreases with advancing age.⁷ Although some types of pain may be better tolerated than others, the presence of any type generally reduces quality of life.¹ When assessing pain, developing a plan of care, and intervening with pharmacologic and nonpharmacologic pain-control strategies in an individual from other cultures, the health care provider should be sure to use the skills necessary for communication across cultures (TABLE 3).³

Nonpharmacologic pain-control measures can be taught to patients to enhance their sense of control over pain and are categorized as cognitive behavioral (e.g., relaxation, guided imagery, music distraction, biofeedback) and physical (e.g., massage, immobilization, heat/cold applications, transcutaneous electrical nerve stimulation [TENS]).³ Providing information about pain-control measures should be an integral part of the pain-control process. If language is a barrier to communication, an interpreter should be arranged to assist in eliciting the nature and intensity of the pain and assessing the effectiveness of pain-control strategies.  

Palliative and Hospice Care

End-of-life decisions made by patients and health care providers alike are often based on beliefs about the futility of quality of life and length of life.⁵ Data indicate that many clinicians view forgoing dramatic and traumatic therapeutic interventions when they appear futile as a treatment failure, or they are uncomfortable terminating care.⁵ Geriatricians focus on improving the quality of life for seniors, wishing to see them function independently and lead a dignified life for as long as possible.²

Palliative care, which began with the hospice movement, focuses on relieving burdensome symptoms and improving quality of life, not only for patients with life-threatening chronic disease, but for their families as well.^1,5 In the course of a chronic disease, early palliative care is offered when the intent of treatment is to extend life; at this point of initial disease therapy, early palliative care helps to transition the patient into a period of advanced disease, at which point treatment to lengthen life is no longer deemed useful.¹ Palliative care specialists may be sought to work with a primary care provider to relieve suffering and maximize quality of life.¹

Distinct from palliative care, hospice care (defined by Medicare) is reserved exclusively for patients with a life expectancy less than 6 months.¹ Comprehensive services are provided to patients and their families in the very late stages of a disease to maximize quality of life and prepare for death.¹ As long as the life span is certified by a doctor as less than 6 months and the patient agrees to a treatment goal of relief of distress versus cure, hospice costs are covered by most health insurance, including Medicare, and can be provided in any setting (e.g., home, hospital, nursing facility).¹ While predicting the timing of death is not a perfect science and physicians usually overestimate the amount of time patients have to live, some signs indicate that death is approaching or imminent (TABLE 4).¹ Hospice programs and many hospitals can provide spiritual, religious, or mental health counseling through clergy, prayer groups, and mental health services for patients and their families so that peace and resolution may be attained at the end of life. Some experience increased anxiety after a loved one has passed; volunteering may serve as a comfort for senior spouses or adult children of the former patient.  

Conclusion

Pharmacists should be familiar with the concepts regarding end-of-life care so that they may better serve seniors with guidance for appropriate and adequate pain relief, palliative care, and hospice services. Furthermore, pharmacists should be familiar with communication skills across cultures that will enable them to effectively serve dying patients, including their families and caregivers, with compassion and respect.  

REFERENCES

1. Beers MH, Jones TV, Berkwits M, et al, eds. The Merck Manual of Health & Aging. Whitehouse Station, NJ: Merck Research Laboratories; 2004:183-197,881-889.
2. Nuland SB. How We Die: Reflections on Life's Final Chapter. New York, NY: Alfred A Knopf; 1994:67.
3. Munoz C, Luckmann Joan. Transcultural Communication in Nursing. 2nd ed. Clifton Park, NY: Delmar Learning; 2005:257,277-295.
4. Rando TA. Grief, Dying, and Death. Champaign, IL: Research Press; 1984.
5. Kane RL, Ouslander JG, Abrass IB. Essentials of Clinical Geriatrics. 5th ed. New York, NY: McGraw-Hill, Inc; 2004:455-474.
6. Lim D. Culture and advance directives. American Nephrology Nurses' Assoc Journal. 1997;24(1):69,97.
7. Zatzick DF, Dimsdale J. Cultural variations in response to painful stimuli. Psychosom Med. 1990;52(5):544-557.
8. Corr CA, Nabe CM, Corr DM. Death and Dying, Life and Living. Pacific Grove, CA: Brooks/Cole; 1994:73-121.
9. Kumasaka L. My pain is God's will. Am J Nurs. 1996;96(6):45-47.
10. Jackson M. The black experience with death: a brief analysis through black writings. In: Kalish RA, ed. Death and Dying: Views from Many Cultures. New York, NY: Baywood; 1980: 92-97.
11. Pickett M. Cultural awareness in the context of terminal illness. Cancer Nurs. 1993;16(2):102-106.

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