Home Care Association of New Jersey



Hospice Services?Can I get care ‘round the clock from hospice? What about while I work??Hospice care is an intermittent care program, meaning that care is provided through visits by hospice team members.?Hospice does not provide ongoing 24-hour care for the patient at home, nor does hospice provide caregivers for the eight to 10 hours a day when a family member is away at work. Hospice care provides support to the family – it does not replace the family. Hospice care is delivered through visits by nurses and counselors, by volunteers (if the family wishes), and by home health aides (if the hospice determines appropriate need).?If no one is available around the clock to care for the patient, families can seek ideas from the hospice social worker about how things can be “pieced together” to provide an appropriate level of care and companionship. Families can look at:?Splitting the caregiving duties so each family member has a “shift.” Having one or more family members take reduced hours at work. Chipping in on payments to one family member who takes a leave of absence from work to stay at home with the patient. Bringing in a relative or friend whose time is more flexible. Hiring a companion for the patient while family members are at work.?Caring for a hospice patient at home is often difficult, sometimes exhausting, and always requires adjustment and extra effort by the family and/or spouse. Nonetheless, families see hospice care at home as the final gift they can offer their loved one, and many family members say they are glad they chose hospice, despite the extra effort. ?Can a family get help taking care of the hospice patient??Hospice is all about helping families care for their loved ones. Hospice staffers provide direct care to the patient and education to family members about providing care.?Hospice, however, does not provide care around the clock, nor does it provide shift care. If the family feels they must hire a companion for the patient for any portion of the day, they are free to do so privately. The hospice’s social worker can help the family identify resources that might help.?What happens if we can’t handle the patient at home??Caring for a patient at home can be stressful and tiring, but many families are glad they did so, to be close to their loved one near the end.?There are valid reasons, however, why a family might not be able to handle caregiving at home, and these will be among the first issues to be addressed by the hospice team. Perhaps the only other person living with the patient is a weak or elderly spouse or parent. Perhaps the home or neighborhood is not a safe location for caregiving that involves narcotic pain relief. Perhaps work schedules of adult children cannot be reduced or juggled.?Many families who don’t think they can manage a patient, in fact, can do so with simple and proper training from the hospice team. Your family members will not be expected to become nurses, doctors or counselors. You will, however, need to provide more time and attention to your loved one.?Useful parallels can be drawn between caring for a newborn and caring for a hospice patient. The physical aspects of caregiving are messy and tiring. Also, the entire household tends to focus on the newborn or the hospice patient. There are many changes in your routine, and possibly some emotional stresses will come out. The major difference is between the joy of a newborn and the sadness of losing a loved one. Just provide care to the hospice patient with the same love and patience as you would to a newborn.?Your hospice caregivers are very experienced in these matters. Remember that the patient and family is the unit of hospice care. It is OK to “unload” your concerns on the hospice team and let them know you are tired and stressed out. They will have helpful ideas on how to cope.?Can the nurse come every day??Frequency of visits is based on the patient’s condition and is determined by the hospice. In cases of severe pain or symptom management issues, daily visits may be necessary, but they are unlikely to be needed for most patients.?How many hours of aides can I get? Why did my friend in another state get more hours from the home health aide than I am??Aides provide support in housekeeping related to the patient’s illness. Aide services are available to hospice families based on need, as determined by the hospice. Every case is considered for aide services, but there is no “requirement” that a hospice agency provide aide services on every case, nor that any particular number of hours be provided.?Why can’t the aide be here when I want her here??Aides typically see several families each day and may not have much flexibility in their schedules. Also, aides sometimes do not own cars and must travel by public transportation, and therefore must organize their days based on bus schedules. If you have scheduling requests, call the hospice office and speak to the person who organizes the aides’ workloads.?Will somebody hold my hand when I die??Hospice provides comfort to the dying patient and family. If it is important to you to have someone hold your hand in your final moments of life, or just be by your bedside, you should say that to your family caregivers and to the hospice staff.?Do family members need to be in the house 24/7??No. It is quite common for hospice staff or trained volunteers to give family members a break of an hour or so if they wish. If your family has been caring for your loved one for weeks, and needs a break of several days, discuss the benefits of respite care with the hospice staff. Respite care will allow the patient to be transported to a health care facility for several days while the family takes a breather.?Do I have to use a hospital bed rather than my own bed??No. Hospice seeks to improve the patient’s comfort. If you feel more comfortable in your own bed than in a hospital bed, you should say so to your hospice caregivers. If there are reasons why a hospital bed would be helpful in your case, the hospice staff will let you know.?What is continuous care??Continuous care is one of four levels of hospice care and payment, under the Medicare and Medicaid Hospice Benefits. It designates a short period – usually a day or less – where the continuing presence of hospice staff is required in the home, as determined by the hospice. Usually these are periods when a patient’s pain has suddenly increased or when symptoms need special attention. Most patients do not require any periods of continuous care. ?What is respite care??Respite care is a period of several days for which the hospice patient is moved to a caregiving facility and receives hospice care there. This facility is typically a nursing home. Respite care is designed to give a tired or stressed family a break from caregiving. If your family is at such a point, discuss respite care with your hospice staff.?Will the nurse really come in the middle of the night??Hospice agencies have “on call” nurses for nights and weekends. Much of the work of an on-call nurse is educational in nature and is done by telephone. In cases of extreme pain or symptom issues, however, the nurse can make a house call at any time if, in her or his judgment, it is necessary.?Will you help me with funeral arrangements??Hospice staff, especially the social worker, will be glad to guide the family in making decisions about the funeral. Families are encouraged to do this well before the patient dies. Let the hospice staff know you’d like to talk about it. ................
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