As medical advancements have changed life expectations, they have also changed lengths of stay in busy hospitals. As a result, people are going home sooner -- and often sicker -- than they have in the past. Consequently, some of the hardest caregiving decisions occur as our loved one is being released from a healthcare facility.
Most hospitals and skilled facilities have discharge planners who assist families in preparing to take loved ones home. Discharge planning should begin as soon as the individual enters the hospital. If this does not occur, family or friends need to ask questions of the medical and nursing staff as quickly as possible and certainly as soon as the word “discharge” is mentioned: will my loved one need oxygen, IV therapy, a hospital bed at home? Will respiratory therapy continue? Preplanning is essential.
Home Care
Options for getting professional caregivers vary depending on the individual’s needs. Often home care is suggested. Home care must be ordered by a physician for a specific purpose, or what is called “a skilled need.” Home care involves nurses, home care aides, several types of therapists, and social workers, and the hospital staff will make these arrangements. Although home care does not begin until the individual leaves the facility, caregivers need to plan in advance for oxygen, hospital beds, IV medications, and other related treatments. If home care was not initiated prior to discharge or if the individual has not been hospitalized but has had major changes in condition while at home, the physician can order home care without hospitalization.
Home care staff provide care and instruction to individuals and caregivers regarding disease processes, medications, treatments, therapies, hygiene, safety, and community resources. Home care is a limited timed – not long-term – service. The expectation is that the individual or caregiver will learn how to provide the care that is needed. Home care services can take place in private homes, group homes, personal care homes and assisted living facilities.
These services are funded under payment plans like Medicare, Medicaid, private insurers, or by the individual. Under Medicare and some private insurers, the individual must be “homebound” – in essence, it must be a taxing effort for the individual to leave the home for treatment.
Home care services do not cover the cost of medication, some equipment or supplies. Some insurers cover the costs of IV medications, supplies and some equipment if ordered by a physician. Other medications require separate coverage. The discharge planner or your insurance company case manager should be able to clarify this for the family.
Lab work may be done by home care staff if there is an additional skilled need, but lab work alone is not sufficient reason for home care services to continue. After an individual has been discharged from home care, the physician may contact a lab that offers in-home services for blood work if medically needed and if it is difficult for the individual to leave the home.
Hospice Care
Individuals facing life-threatening or life-limiting illnesses must also make decisions. They may opt for home care and then transition to palliative or hospice care, depending on their needs and desires. Honest discussions need to occur between the ill individual, family and physician regarding the disease process affecting the individual. Difficult questions need to be addressed:
• What is the prognosis with and without treatment?
• What is the quality of life with and without the treatment?
• What kind of care is going to be needed?
• Where does this individual want to spend his or her remaining days?
Many health care providers have a difficult time initiating end-of-life discussions with those in their care. Many physicians have enjoyed long-term relationships with the individual and their goal is to heal those in their care. Healing can take many forms, however, and sometimes it means simply lessening pain and letting go. So the individual or caregiver may need to initiate the conversation. Make a list of your questions and concerns. If at all possible, have someone else with you to listen, take notes and offer support.
Most Americans say they would prefer to die at home, yet less than 25% do. The reasons vary: sometimes, it is the result of family preference, lack of caregivers, rapidity of decline, and uncontrollable symptoms. Hospice and palliative care can be provided in private homes, group/personal care homes, assisted living facility, nursing homes and hospitals. Hospice services can also be provided in hospice care facilities.
Hospice is a family-centered service designed to meet the physical, emotional and spiritual needs. The focus of hospice care is comfort and the control of pain and symptoms, so curative treatments such as chemotherapy are not continued.
Anyone at any age with a serious illness whom the physician feels has months rather than years to live is eligible to receive hospice services. The physician must order hospice services but unlike home care, the family may call the hospice to initiate the call to the attending physician. The physician will certify that if the disease process progresses normally life expectancy is less than 6 months. Hospice services can be recertified after six months if the individual has shown a decline in their condition. Some patients improve once pain and symptoms have been controlled and are discharged from hospice; they can be readmitted if conditions worsen again.
Hospice services include nurses who provide direct care with the focus being pain and symptom control, teaching and emotional support; aides who provide hands-on hygiene care; volunteers to “sit” with the individual to allow caregivers time away; social workers who help with financial concerns, end-of-life directives and emotional support; chaplains who help meet spiritual and emotional needs; and bereavement counselors who support the caregiver, family and friends before and after the individual dies. Adjunct services such as art, massage, music and pet therapies are also available. Respite care is available allowing the individual to stay in a health care facility for up to 5 days at a time, to allow for caregivers to have rest and relief.
Medications related to the life-ending illness, as well as medications for pain and symptom management, are covered. Oxygen, equipment, and supplies such as adult incontinence pads are provided.
Medicare, Medicaid, most private insurers cover hospice services. Those unable to pay may qualify for free care with some hospices.
Palliative Care
Under this form of care, aggressive treatments such as chemotherapy can continue, but pain management experts work to control pain and symptoms too. Coverage for this care varies depending on insurance plan benefits. Many will transition to hospice care if conditions/desires change.
Please do not let words like “hospice” and “palliative care” become barriers to receiving the care and support you and your loved one need. Hospice is sadly underutilized. Initiation of services as early as possible allows for maximum benefit to all.
To find the hospice or palliative care agencies in your area, contact the National Hospice and Palliative Care Organization Helpline at 1-800-658-8898 (toll free) or http://web.nhpco.org.
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