GUIDE FOR CARE AND SUPPORT DURING SERIOUS ILLNESS
Chapter 3: Care at Home: Family, friends, and professionals
Selecting home health or hospice care
Being seriously ill, or taking care of someone who is seriously ill, can take a tremendous personal toll in terms of time and energy. A multitude of things must be dealt with everyday: bathing, eating, irregularities of digestion and elimination, changes in energy, mobility, household tasks, shopping for planned and unplanned needs, going to medical appointments, and more.
At some point in the course of an illness, many people choose to seek professional care-giving assistance. Hiring an hourly caregiver, or being connected with a home health or hospice program, allows many people to continue caring for a loved one at home.
Despite what some think, admitting the need for additional help is not a sign of failure, or even a sign that a loved one is getting much worse. To the contrary, seeking additional help from the people best trained and equipped to provide it, is a sign of good judgment. The truth is, that no one is an expert at everything. Knowing your own limits in terms of energy and expertise is the first best step towards improving any tough situation.
With all that in mind, a few questions come to the fore. First, what do home health or home hospice care have to offer? And what's the difference between the two? How does one access hospice and home care services? What if I need someone to provide paid 'hourly care?'
What does home health care or home hospice care have to offer?
Home health and hospice care offer some, or all, of the following: skilled nursing, home health aides, physical or occupational therapists, medical social workers, and in some cases volunteers and chaplains.
Services for both are provided either in the home or in an assisted living or extended care facility. Services can include nursing, professional assessment, practical hands-on help (doing tasks such as bathing assistance, dressing changes, catheter care, financial assistance forms, etc.), and coordination of care with the patient’s doctor. For some home care, and for all hospice care, there is a 24 hour on-call nurse available by phone who can give the patient and family guidance about medication usage and symptom management, in addition to answering after-hours questions.
In both cases, the ill person and his or her caregivers are taught what to expect in term of treatment side-effects or illness progression, and how to adapt to physical changes as they occur. Often, the knowledge and support provided by home health and hospice involvement can enable families to continue to effectively and safely care for a loved one at home.
What is the difference between home health care and hospice care?
There are a variety of differences between the two, but the most significant difference involves the reason for the care.
Home health care is usually best for persons who have serious, but not life-limiting illnesses, whereas hospice care is reserved for those who have a life-limiting illness with a life expectancy that may be six months or less, as determined by their doctor.
Hospice does not mean 'no care,'nor does it mean a person has to 'give up' all treament. In fact, palliative, or hospice care, can be defined as 'the aggressive pursuit of comfort.' Some hospices cover comfort-focused chemotherapy and radiation, in addition to other therapies that are intended to improve quality of life in a person who has a limited life expectancy and who does not wish to recieve cure-focused treatment.
For hospice, the 'unit of care' is the family system, not only the patient. Hospice provides team-based care, and usually have an expertise in pain control and symptom management. Hospice care strives to meet the patient’s physical, emotional, social, and spiritual needs, as well as the needs of the entire family. (Home care generally focuses primarily on the patient.)
Additionally, home health care reimbursement rules usually require that a certain level of 'skilled care' be present in order for Medicare or private insurance to reimburse for costs. (If in doubt about what 'skilled care' means for you, ask your doctor.) Both home health and hospice staff try to help patients use their abilities as fully as possible by controlling pain - while at the same time not significantly impairing alertness.
Most hospice care is usually fully reimbursed by both Medicare and by many private insurance companies. Hospice care tends to provide more comprehensive services for a longer period of time, including, much of the time, 100% reimbursement for the following: intermittant visits from nursing, social work, home health bathing aides, chaplain, medicines related to the primary diagnosis, and medical equipment and supplies. Some hospice programs have respite care options for caregivers who are temporarily unable to care for a loved one at home.
How does one access home health care or hospice home care services?
If you are in doubt as to whether home care or hospice would best fit your needs, please check with your physician for a recommendation or referral. He or she is most likely to be familiar with your medical situation and will eventually be responsible for writing the orders. Try to flesh out with your doctor which service, home care, hospice, or hourly care, might be the best choice for your particular situation.
Before receiving a referral or recommendation for home health or hospice care, it might be necessary for you to update your doctor about recent changes in your loved one's condition or increased caregiving needs. For instance, do you need additional professional monitoring of symptoms and pain, help with decisions on daily care, and available on-call nursing help? If you can't reach your physician or you think your family member really needs hospice, call your area hospice and ask for a consultation visit. Most hospices will have a nurse come out to assess whether your loved one might qualify for hospice services.
Most doctors have established working relationships with either hospice or home care. Depending on where you live, there may be one, or many, hospice or home care programs available. In order to choose which programs are best for you, ask your doctor for a list of local home health and hospice agencies. Or, if there is more than one program to choose from, you have the option of calling them yourself to determine which one is the 'best fit.'
Sometimes a hospice or home care program is part of the health care system from which you are already receiving care. Other times the programs are independent and community based. In either case, the home care or hospice program should be able to work with your doctor. (You may even want to check with friends about which program they have used in the past, and about what their level of satisfaction with services was.)
And what if I need something called 'hourly care'?
Hourly care, which is often notcovered by either hospice or home care, is provided by individuals or home care agencies, usually for private payment. This care might become necessary if caregiving needs have increased or if your family's ability to meet the needs has decreased, but the ill person does not have 'skilled needs' and does not qualify for hospice. Home health agencies usually charge an hourly fee for providing respite services, bathing assistance, or nursing 'case management.'
This kind of care can become expensive, but is nevertheless a means some people use to 'fill in the caregiving blanks.' Some ill persons may need extra hourly help in the night-time hours, while others may need a few hours each morning to get ready for the day. Paid hourly caregivers are one way to 'plug in' care gaps. Family, friends, and neighbors are an alternate way.
Conclusion.
Trying to figure out the nuts and bolts of health care reimbursement is tough at the best of times. Add exhaustion, stress, and a seriously ill loved one into the mix and it can become very difficult. We'd like to apologize if the above version of hospice and home care differences is too complicated. If it seems like too much to muddle through, just ignore it all and ask your doctor what he or she thinks about adding helpful resources.
Don't forget that deciding to bring in outside help at home is often a big transition for an ill person and his or her family. You should know that like most changes, it usually takes some time to adjust.
During the transition to home health care, hospice, or paid hourly care, it is important to communicate with members of your health care team. Let them know how things are going and whether you need additional help, and if the help you have is doing a good job.
Consoling Grace (c) 2006, Eileen T. Geller.