When Hospice Is the Best Option: An Opportunity to Redefine Goals
Ms. D is a 45-year-old woman with ovarian cancer and hepatic metastatic disease. She has received multimodal treatment over the past 5 years. Ms. D lives in her own home, is divorced, and is a single parent of two adolescent children. Her mother is her primary caregiver and also has a deteriorating health condition.
ABSTRACT: Abstract: More than 50% of patients diagnosed with cancer in 2008 died in the same year, according to estimates from the American Cancer Society. Clearly, while survival rates for many cancers continue to improve, a significant number of patients with cancer will not survive their disease. Hospice care provides terminally ill patients with a unique set of benefits, services, and support. Its goal is neither to prolong life nor hasten death, but rather to provide total care that maximizes quality of life. Less than one-third of patients receive hospice care near the end of life, however, and many referred patients die within days. Many barriers and misconceptions related to hospice care can prevent timely referrals and impede discussions. Also, conversations about goals of care, treatment preferences, and advanced care planning can be challenging and overwhelming. This article reviews the hospice care model and highlights ways in which oncology nurses can make a difference in how patients live their final days
Ms. D is a 45-year-old woman with ovarian cancer and hepatic metastatic disease. She has received multimodal treatment over the past 5 years. Ms. D lives in her own home, is divorced, and is a single parent of two adolescent children. Her mother is her primary caregiver and also has a deteriorating health condition.
Ms. D’s functional status is very poor. She was enrolled in a phase I clinical trial, however a further decline in functional status, coupled with increased symptoms and diminished renal function, required that she withdraw from participation in the trial.
Her cancer has progressed with extensive peritoneal involvement and increased ascites that are managed with a peritoneal catheter. She and her children have stopped talking to one another and there is increased tension between Ms. D and her mother. Ms. D has begun to question her spirituality and feels that God is punishing her.
She does not want her health care providers to think that she is “giving up and throwing in the towel.” She was admitted to the hospital with intractable nausea and vomiting and a possible malignant bowel obstruction. She has no advanced care planning and is a full code. As oncology nurses, we need to assess the situation and ask ourselves, “Is this patient appropriate for referral to hospice care?”
INTRODUCTION
As Americans, we live in a death-denying society, surrounded by expansive, advanced technology and interventions that can extend and prolong life at all costs. We have made great strides in cancer care through early detection, prevention, and treatment, yet a significant number of patients still do not survive their disease. In 2008, for example, the American Cancer Society estimated 1,437,180 new cancer cases (all sites) and 565,650 deaths.[1] Most people who have survived cancer and completed their course of treatment live with the underlying fear and uncertainty that their cancers may return. While some people with advanced cancer are living longer and with improved quality of life, hospice care is a choice that provides a unique set of benefits, services, and support.[2]
Although patients and families report that they are satisfied once enrolled in hospice level of care, many patients are referred too late or not at all.[3] Less than one-third of patients receive hospice care near the end of life and those who are referred die within days.[4] The transition to hospice care, including the establishment of a trusting relationship with the interdisciplinary team, takes some time, and patients with very short lengths of stay cannot reap all of the benefits of hospice care.[5] Because oncology nurses are typically the mainstay during patients’ and families’ course of cancer care, they stand at the forefront in assisting patients with complex end-of-life care decisions and in facilitating end-of-life care discussions.
WHAT IS HOSPICE?
The Hospice Foundation of America defines hospice as comfort and supportive care given to patients and their loved ones when illness does not respond to treatments that have curative intent.[6] The philosophy of hospice is to provide the total care of patients who have a life-limiting illness. This includes meeting patients’ physical, social, spiritual, and psychological needs. The goal of hospice is neither to prolong life nor hasten death, but rather to maximize quality of life for patients as they travel along this last journey.
Patients, regardless of age, are eligible to receive hospice care if their physicians certify them as having a life expectancy of 6 months or less, should the disease follow its expected course. While it is the role of the physician to recommend hospice care, it is the patient’s right and decision to determine when hospice is appropriate and which program suits his needs. Although insurance coverage for hospice is available through Medicare, most private insurance plans, including HMOs and other managed care organizations, include hospice level of care as a benefit. Forty-four states in the US have a Medicaid Hospice Benefit. Also, through community contributions, memorial donations, and foundation gifts, many hospices can provide free services to patients unable to pay for them. Other programs charge in accordance with ability to pay.
THE MEDICARE HOSPICE BENEFIT
In 1982, the Tax Equity and Fiscal Responsibility Act authorized Medicare to reimburse for hospice services. Due to the passage of this bill, hospice became publicly funded under the Medicare Hospice Benefit.[7] The Medicare and Medicaid hospice benefits include the same services: skilled nursing care, medical social service, hospice physician services, and counselor/spiritual care. (These services/team members are considered “core” and are required by all hospice programs.) Depending on program size, a variety of other services may be provided by the hospice interdisciplinary team. These may include nursing assistants; homemaker services; physical, occupational, and speech therapies; expressive therapies (eg, art, music, horticultural); durable medical equipment; and medications.
Three of the most distinguishing characteristics of the hospice care delivery model include trained volunteers, 24-hour on-call availability, and bereavement support for 1 year after the death of the loved one. Trained volunteers can offer companionship, provide necessary respite time for the primary caregiver, and help with everyday tasks such as grocery shopping and babysitting. A hallmark of hospice care is the 24-hour, 7-day-a-week availability of a hospice team member. Patients and caregivers are often relieved to know that someone can be telephoned in the middle of the night if a problem arises, and that a visit will be made to the patient’s residence if needed. As hospice care is patient-family–centered care, surviving family members will be attended to for 1 year through a bereavement support program. The hospice care team and designated bereavement support professionals will visit them at specific time points, contact them by telephone and/or mail, or provide information about other bereavement support groups.
Most hospice care is provided in the home, but it is sometimes necessary for the patient to be admitted to an acute care, extended care, or hospice inpatient facility. Should a patient’s needs exceed that which a family can provide, and if deemed medically necessary, continuous care in the home can be provided for 8- to 24-hour periods on a short-term basis.
WHY HOSPICE?
Hospice provides an alternative to what many perceive as overuse of technology and poor symptom control for dying patients, a perception confirmed by the 1995 Study to Understand Prognosis and Preferences of Outcomes and Risks of Treatment (SUPPORT).[8] This study, the largest research project examining end-of-life care in the US, found people die in pain, isolation, and perhaps with unnecessarily increased health care costs. Also, families of patients who died in hospitals reported insufficient information about existing community resources such as hospice care.
Furthermore, a US Institute of Medicine report concluded that “people have come to both bear a technologically overtreated and protracted death and dread the prospect of abandonment and untreated physical and emotional stress.”[9] Casarett et al. suggest that a variety of other factors may have a greater influence on hospice use, including a lack of communication about patients’ preferences for treatment and care.[4]
Health care providers are often unaware of patients’ preference regarding life-sustaining treatment or interventions.[10,11] Too often, in the absence of forethought, healthcare providers become involved in futile interventions, with patients’ wishes and preferences for care unknown and family members burdened by questions about choices. These concerns may be diminished with the help and support of a hospice team.
HOSPICE CARE BARRIERS AND MISCONCEPTIONS
Many barriers to and misconceptions about hospice care remain embedded in our society. As oncology nurses, it is important to understand these issues and recognize how to resolve these barriers to the utilization of hospice care. The following communication strategies may be helpful in responding to feelings commonly expressed by patients when healthcare providers initiate discussions about hospice.
• “This means I’m giving up!” The benefit of treatment must always be weighed against the burden of treatment and the patient’s prognosis. Health providers should always consider the patient’s performance status, symptom burden, psychological distress, and personal preferences. A possible response: “Some people may actually have improved quality of life when involved in hospice care because symptoms are being effectively managed. If, in the future, you want to have an intervention that hospice does not provide, you can withdraw from hospice care. We will not abandon you. We will assess how you are feeling overall and make decisions that are consistent with your wishes.”
• “I can’t be that sick; I really don’t need that yet!” As discussed, an adequate period of time is necessary for patients to develop a trusting relationship with the hospice interdisciplinary team. A possible response: “In the past months, we focused on treating your disease.Recently, the goals of care have shifted. Now, we are trying to help you live as fully as possible by treating your symptoms and helping you obtain your goals. The time to reap the full benefits of hospice care is now. Hospice care can also provide support for your family.”
•“There’s no hope left.” Hope is a necessary element of survival and is essential for most patients with a life-limiting illness. Oncology nurses should respect a patient’s desire to maintain hope but must be able to balance that hope with the obligation to provide accurate information. This allows for reorganization of priorities and for adaptations in coping with the disease process. A possible response: “Sometimes we have to redefine what we hope for...it may be an opportunity to heal past hurts, to leave a legacy, or to attend an upcoming family event.”
Effective communication is the cornerstone of end-of-life care and sets the tone for all aspects of care in the advanced cancer experience. Communication among the oncology nurse, patient, family, and other healthcare team members is a continuous process as patient management shifts from attempts at cure to a focus on comfort.
THE CASE SCENARIO (MS. D): A HOSPICE REFERRAL
Metastatic ovarian cancer with poor functional status and malignant bowel obstruction is associated with a poor prognosis.[12] Owing to Ms. D’s rapid physical decline, increased physical and psychological symptoms, and her challenged personal relationships with her children, her mother, and God, discussions about hospice level of care should be initiated immediately. No further options for curative treatment are available for Ms. D. After clarifying Ms. D’s understanding of her disease and expectations, the oncology nurse can facilitate discussion about her goals of care. This can include other members of the healthcare team (eg, physicians and social workers). Optimally, a collaborative meeting between the family and hospice provider should be planned. In this forum, there would be adequate time to respond to patient and family concerns, to have the hospice provide information, and to develop an individualized plan of care to meet the needs of Ms. D and her family.
Performing advanced care planning discussions now and attending to Ms. D’s wishes may help to relieve the burden of care from her mother later. Ms. D will also benefit from a meeting with her children. The importance of family increases with the diagnosis of cancer and the threat of death heightens involvement with close, important relationships. Cancer patients also have been found to show less psychological distress if they seek control through a partnership with God or higher power.[13] Patients had more depression, poorer quality of life, and exhibited anger toward others if they perceived their illness as a punishment from God.[14] Spiritual counseling provided by a hospice team would provide Ms. D with an opportunity to discuss her relationships with God and her children.
IMPLICATIONS FOR ONCOLOGY NURSES
The most important focus of end-of-life care is to identify ways to improve the dying experience. Because of the intimate contact and close proximity of the oncology nurse to the patient and family through day-to-day observation and care, patients are in a pivotal position to affect quality of life at the end of life for themselves and their families. The American Nurses Association states that nurses have a duty and responsibility to educate patients and families about end-of-life care issues, to communicate relevant information about complex decision-making processes, and to advocate for patients. The diagnosis of advanced cancer carries with it the element of time, and as death nears, time becomes more critical. Having a sense of life completion, by being able to help others, saying and sharing important things, finding a sense of meaning and peace within oneself, and making a positive difference in the lives of others may allow people with advanced illness to reflect on a life well-lived.[15] Support, guidance, and facilitation by oncology nurses have the potential to make a significant difference in the extent to which advanced cancer patients die well and at peace.
References:
1. American Cancer Society: Cancer Facts and Figures, 2008. Atlanta, GA, 2008. Available at: http://seer.cancer.gov/csr/1975_2005/results_single/sect_01_table.01.pdf. Accessed on February 22, 2009.
2. Casarett D, Pickard A, Bailey FA, et al: Do palliative consultations improve patient outcomes? J Am Geriatr Soc 56(4):593â599, 2008.
3. Casarett DJ, Crowley R, Hirschman K, et al: Caregivers’ satisfaction with hospice care in the last 24 hours of life. Am J Hosp Palliat Care 20(3):205â210, 2003.
4. Casarett D, Van Ness PH, O’Leary JR, et al: Are patient preferences for life-sustaining treatment really a barrier to hospice enrollment for older adults with serious illness? J Am Geriatr Soc 54(3):472â478, 2006.
5. Lynn J: End-of-life care listed as a national research priority. Am J Hosp Palliat Care 18(2):85â86, 2001.
6. Hospice Foundation of America: What Is Hospice? Available at: http:www.hospicefoundation.org/hospiceInfo/. Accessed on February 22, 2009.
7. Carlson MD, Morrison RS, Bradley EH: Improving access to hospice care: Informing the debate. J Palliat Med 11(3):438â443, 2008.
8. Knaus WA, Harrell FE Jr, Lynn J, et al: The SUPPORT prognostic model. Objective estimates of survival for seriously ill hospitalized adults. Study to understand prognoses and preferences for outcomes and risks of treatments. Ann Intern Med 122(3):191â203, 1995.
9. Field MJC: Approaching Death: Improving Care at the End of Life. Field MJ, Cassel CK (eds). Washington DC, National Academy Press, 1997.
10. Wenger NS, Phillips RS, Teno JM, et al: Physician understanding of patient resuscitation preferences: Insights and clinical implications. J Am Geriatr Soc 48(5 suppl):S44âS51, 2000.
11. Wenger NS, Kanouse DE, Collins RL, et al: End-of-life discussions and preferences among persons with HIV. JAMA 285(22):2880â2887, 2001.
12. Ripamonti C, Bruera E: Palliative management of malignant bowel obstruction. Int J Gynecol Cancer 12(2):135â143, 2002.
13. Breitbart W, Rosenfeld B, Pessin H, et al: Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 284(22):2907â2911, 2000.
14. Pargament K, Smith B, Koenig H, et al: Patterns of positive and negative religious coping with major life stressors. J Sci Study Religion 37:717â724, 1998.
15. Steinhauser KE, Bosworth HB, Clipp EC, et al: Initial assessment of a new instrument to measure quality of life at the end of life. J Palliat Med 5(6):829â841, 2002.
