Hospice is a particular type of benefit within palliative care. Hospice is "a special way of caring for people who are terminally ill."1^(pe1) A person may qualify for Medicare hospice benefits if he/she is Medicare Part A eligible, is terminally ill, and is expected to live less than 6 months and has indicated in writing his/her choice for hospice care over other treatment options for the terminal illness.2 In addition, specific hospices may have individual criteria concerning caregivers and environmental safety (for the patient and hospice employees) that must be considered before a patient would be accepted into the hospice program. Although Ms Mason meets the Medicare criteria, the challenge in developing her individualized hospice plan is the lack of a designated caregiver who can provide and coordinate her complex, comprehensive 24-hour care needs.

The Role of Hospice Services

Hospice services may be provided in a variety of settings: inpatient hospital units, long-term care facilities, respite centers, and a private home. Because Ms Mason has requested to receive hospice care in her home, this consultation will focus on establishing a home hospice plan for her.

One challenge is the fact that Ms Mason requires the presence of continuous care because she is so debilitated. The Medicare hospice benefit directs hospices to provide continuous care as a service for persons with acute symptom management needs, who would be at risk for hospitalization if the symptoms were not controlled. Ms Mason, however, requires continuous care for chronic symptoms. This difference is significant because hospices are not required to provide and/or finance routine 24-hour caregiving. In all likelihood, Ms Mason will require continuous care throughout the remainder of her life, which she will need to pay for out of pocket. Although a hospice may provide continuous care for acute symptom management, this service is not intended to negate or replace the necessity of having available a designated 24-hour caregiver to ensure that the patient's needs are met. Having an available 24-hour caregiver is important to avoid the potential abandonment of the patient if an assigned healthcare worker is unable to fulfill his/her assigned shift. Thus, the presence of a designated caregiver provides an important safety net for the patient.

Paternalism

Hospice inclusion criteria have the potential of being paternalistic. Paternalism means that the agency believes that it is in a better position to determine or know what is in the patient's best interest than the patient or the patient's surrogate does. Based on the preadmission assessment, the hospice has determined that Ms Mason's acuity and care needs dictate that she have a caregiver present in her home at all times although she disagrees. Although this caregiver requirement is intended to benefit patients, it may unintentionally discriminate against those with minimal social ties, such as single women like Ms Mason.

Conflict of Interest

Every hospice admission coordinator juggles obligations to promote the patient's safety and autonomy against the organization's available resources and mission. When making a decision whether to accept a patient into hospice care, the agency's representative must consider the agency's liability if the representative believes that the plan of care is unsafe. If a patient is in an environment that may make the patient more vulnerable, the hospice may not be willing to enter into a professional relationship with the patient, but these decisions may be directly impacted by the philosophy of the hospice. For example, some hospices may be willing to establish a contract with a homeless person, whereas other hospices may not. Thus, the potential exists for a hospice program to make admission decisions that promote the agency's needs and goals over those of a prospective patient.

Another potential conflict may be related to the fact that it is an oncologist that is proposing "let's call the nurses." Will the oncology staff nurses feel free to tell the oncologist, "I'm not going to participate in this plan"? Speaking from the hospice management perspective, this proposition feels uncomfortable. The hospice team should take a step back and consider whether the hospice is willing to assume the additional responsibility of hiring and scheduling professional care providers from outside the hospice's traditional employee pool.

Autonomy

In a free market system, a patient who has the resources to pay for services out of pocket may be able to access services not available through other payment sources. Because Ms Mason has financial resources that she is willing to use, the next step may be to creatively identify potential options that might help her get to her goal of being at home. Autonomy at this point involves promoting informed choices for all stakeholders.

Some may believe that autonomy means "I get to do what I want to do," but the hospice team has to balance minimizing harm, meeting the patient's care needs, and promoting the patient's wishes when forming a plan of care. The National Hospice and Palliative Care Organization1^(pe1) stated that "ethical behavior and consumer rights includes [horizontal ellipsis] decision-making and responsibility to the patient and family." This statement emphasizes that hospices have a responsibility to be clear about what services can be provided within a safe appropriate environment. Although consumer rights include the patient's/surrogate's right to decision making, the hospice also has a responsibility to communicate to the patient and family/caregiver about what can realistically be accomplished in addition to minimizing the potential for financial exploitation and/or the patient being in an unsafe environment. It was reasonable for the oncologist to say, "Hey, she wants to get home, she has the resources, can we do this?" However, there may be a limit to the amount of time and resources that the nurse manager or discharge planner/case manager can use while organizing and implementing this complex individualized plan. Rights come with shared responsibilities,3 which, in this situation, may include Ms Mason participating in the identification and selection of a 24/7 caregiver. If Ms Mason is unable or unwilling to share in the decision-making responsibilities, then goal of returning home may be unrealistic for Ms Mason at this point in time.

Recommendations

1. The hospice needs to determine if Ms Mason's care can be safely provided in her home environment if all the necessary resources are obtained. If the agency is unwilling to admit Ms Mason into home hospice, then efforts should be refocused toward receiving hospice care in a long-term care facility or respite center.

2. If the agency is willing to accept Ms Mason into home hospice and Ms Mason remains committed to using her financial resources, then efforts would need to focus on identifying a 24-hour caregiver from within her social network, if possible. If a caregiver cannot be determined from her social network, another option would be for the hospice to assist Ms Mason to hire a person to live in Ms Mason's house and fulfill the caregiver/coordinator role. Because it has been determined that Ms Mason requires continuous skilled care, then the hospice agency could also assist Ms Mason in contracting with a temporary staffing agency or advertising in a local newspaper for qualified nurses to be paid at Ms Mason's expense. In the absence of a surrogate to facilitate this hiring process, the hospice agency will need to determine how many resources the agency is willing to allocate to make Ms Mason's goal occur.

3. If the decision is made to move forward to fulfilling Ms Mason's wish to receive hospice at home, a contingency plan will be necessary in the event that the identified paid caregiver options do not meet basic expectations for safety (eg, being absent, termination of employment, or interpersonal issues).

REFERENCES