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Life is All About Transitions: A Salute to Home Health Care and to Hospice

November 2008

By Amanda Newton

Both services can benefit those who directly need them and their families.

As the trend of helping people age in place continues in this country, both home health care and hospice care will play a key role in making that possible.

However, there is a lot about home health care and hospice care that people don’t know about or that they might have heard mistaken information about. The National Hospice Foundation (NHF) found that the services provided by hospice care are what Americans want; yet 83 percent of them don’t know about hospice care. NHF research also showed that 80 percent of Americans said their wish is to die at home. Of the 2.4 million Americans who die each year, less than 25 percent actually die at home. Of the 700,000 patients who receive hospice care, over 75 percent die at home.

While more people might be familiar with home health care than with hospice care, there are still details of this service that they might have questions about.

Home health care involves a wide range of health and social services which are administered in a person’s home to recovering, disabled or chronically ill persons. It includes medical, nursing, social, and therapeutic treatment and assistance with the activities of daily life.

Kareem Meiki and his wife have owned United Home Health Care of Shreveport for 25 years. He said that everybody who is homebound and certified as such by their doctor is eligible for home health care. Their doctor will determine the specific services they need.

“The basic standard is the person must be homebound and meet the criteria for home health,” he said. “These standards are established by the state of Louisiana and the federal government.”

Home health care is provided by skilled nurses, physical therapists, occupational therapists, speech therapists, medical social workers and certified nursing assistants, said Ada Lowe, director of Willis-Knighton Home Health.

Skilled nurses provide assessment and manage the disease processes and medication regimens. They can also provide and teach infusion therapy, wound/wound vac therapy, ostomy care, catheter care; and pain management.

Rehabilitation services provided as home health care include home exercise programs, gait training, activities for daily living and instruction about home safety. Nursing assistants provide assistance with personal care needs.  

Medical social workers assess for psychological-social needs, assist with long-range planning, community resources, and medication assistance.

Although home health care can be paid for by a patient or a patient’s family members, there are a number of public and private sources available to cover the costs. Some private insurance includes provisions for home health care. Public third-party payers include Medicare, Medicaid, the Older Americans Act, the Veterans Administration, and Social Services block grant programs. Community organizations, such as local chapters of the American Cancer Society and Alzheimer’s Association, also provide funding for home health care.

“Medicare and most private insurance companies require that the patients are confined to the home by the physician,” said Lowe. “Homebound does not mean bedridden or bed bound. The patient may leave home for infrequent and short duration health care appointments. The patient may also leave home occasionally for non-medical purposes such as (the) barber/beauty shop, church, (and) other infrequent/unique events.”

When it is time to choose a home health care provider, it is important to do a little research and feel comfortable with the people who will be coming into your or your loved one’s home. Many people ask their primary care physicians for recommendations and that is perfectly fine. However, Meiki wants people to be aware of an important right that patient’s have.

“The rule of thumb is the referring physician must provide the patient with a list of licensed certified home health providers in the area for the patient to pick from - that is Patient Freedom of Choice,” he said.

A Medicare-certified home health agency has to meet federal minimum requirements for patient care and management. These government requirements ensure the care these agencies provide is supervised and controlled. Home health care agencies recruit and supervise their personnel, and therefore assume liability for all care.

Like home health care, hospice care is often administered in the home. Both home health care and hospice care can greatly benefit those receiving services, but there are many differences between the two.

NHF research found that there are four main services Americans feel are important for a loved one who has less than six months to live: someone to be sure that the patient’s wishes are honored; choice among the types of services the patient can receive; pain control tailored to the patient’s wishes; and emotional support for the patient and family.

Hospice care can provide all of those services and many more.

The National Hospice and Palliative Care Organization estimates that for every one hospice patient, there are two more who could benefit from hospice services. Hopefully, with more knowledge of what hospice is and what it is not, more people who can benefit from hospice will seek it out.

Hospice care involves a team of skilled professionals and volunteers who provide medical, psychological and spiritual care for the terminally ill. It also includes a strong support system for the patients’ families.

Hospice care is often administered in the home and enables the patient to stay in their home and be with their family. However, it can also be administered in nursing homes and some hospices have their own facilities for on-site hospice patient care. Hospice professionals are available 24 hours a day. They work to assist the family in caring for the patient, while honoring the patients’ wishes and keeping them free from pain.

For some people, the idea of having strangers come into their home during their loved one’s last stage of life might be a strange concept. But for many people, these services are welcomed and improve their loved one’s remaining time. In fact, NHF research found that the majority of people are willing to have an outside organization come into their homes and assist with end of life care. Sixty-six percent would welcome help from an outside organization, like a hospice, while 24 percent would prefer to take care of the family member by themselves, with the help of family and friends.

Kim Pearson, director of nursing at Community Hospices of America in Shreveport, said anyone who has a terminal diagnosis with a prognosis of six months or less to live is eligible for hospice care.

“That doesn’t mean that we only have them for six months,” she explained. “We have had some people for close to two years. Everyone presents differently and, excuse the term, everybody dies differently. But they all have a terminal diagnosis.”

“Medicare Part A pays totally for hospice”, said Pearson. “The family or patient does not have any out of pocket expense. Medicaid also pays for hospice. If a patient is in a nursing home, Medicaid pays for their bed and board and Medicare pays for hospice.”

Billie Tipton is director of Willis-Knighton Hospice and she said that it is important for those choosing hospice to realize it is “for comfort and not cure.”

“They have come to the place in their disease process where they have decided not to have aggressive treatment,” Tipton said.

The biggest misconception about hospice care, Tipton said, is that a person is placed on hospice to die, when the truth is they are sent to hospice to live.

“This sounds weird except a person can begin to live out the days they have left once their pain and other comfort issues are met,” said Tipton. “Contrary to what some people think, including some nurses, doctors, and even instructors in the medical field, hospice does not go in and instantly place every patient on morphine and let them die. If they are placed on any medication it is for relief of some symptom, with the approval of the physician.”

Another common misconception is that the time frame the physician gives for the patient’s life actually shortens a person’s life. Hospice standards require that the physician give a time frame. The physician determines this recommendation based on the patient’s disease, its prognosis and normal progression, when those factors are suggestive of a life expectancy of six months or less, Tipton said.

 “The patient is not discharged from hospice when they live past the six months unless they are no longer terminal or they choose to seek aggressive treatment. At any time they no longer want to be on hospice they may revoke the hospice benefit.”

When choosing a hospice care provider, an important thing to consider is  responsiveness, said Kathryn Merritt, patient care manager at Odyssey Healthcare of Minden and Shreveport.

“We pride ourselves on responding very quickly when a patient calls,” Merritt said. “When we get that patient’s name and that they want to talk with us about hospice, they will be visited within three hours. If we find that they are appropriate, and the doctor wants them to be on hospice, we will have them admitted within 24 hours of that first phone call.”

Merritt said that patients under their care have services at their disposal 24 hours a day, seven days a week. That is true of most all hospice providers.

Since hospice care is a interdisciplinary care, Merritt said there is always a nurse, chaplain and social worker on call.

“So, no matter what their need is, whether it is a physiological, medical, or an emotional/spiritual need, we have somebody that can be there within an hour.”

Hospice is about far more than pain management and in fact, certain treatments can still be administered to a person under hospice care.

“There is (a) misconception that a person can no longer have any treatment (when under hospice care), such as radiation,” Tipton said. “This is not true.”

Tipton explained that if the treatment is for comfort or symptom control, and not for a cure or to prolong life, then it is considered part of the comfort measures offered.

Obviously, when a person begins hospice care, it is a very emotional time for them and their families. However, it is not a time filled only by sadness and fear. Hospice professionals stress that hospice care gives the patient and family more quality time, and removes a lot of the burden that the family members have been bearing as they cared for their loved ones. This frees them up to really focus on just being with the patient.

Pearson said she tries to teach the families of those under hospice care to celebrate and live what time they have left with their loved one.

“Let’s have family get-togethers. Let’s rejoice in (your) children and all the accomplishments you have done in your life.”

“Often times, (hospice care) is just as much about the caregivers as it is the patient,” said Merritt.

When a caregiver doesn’t have to worry about the minutiae of care, and does not have to worry about their loved one being uncomfortable or in pain, they gain precious time to spend with their loved one.

A hospice patient isn’t necessarily homebound, either. If they are able, they can leave the home, and are actually encouraged to do so if it is what they want.

“The person is encouraged to get out and do the things they enjoy in life,” Tipton said. “Certain conditions and provisions may apply to travel outside of a 50 mile radius (and) in some cases hospital and other hospice resources may be utilized.”

Tipton explained that travel outside of the 50 mile limit requires the patient to get off of hospice in case a need should arise and they would need to go to a hospital. This keeps the patient or family from getting stuck with the cost of a visit from an out of area provider. In some cases, the hospice can contract with another hospice to check on the patient while they are out of town.

Following the death of a hospice patient, the hospice provider will continue to assist the family through bereavement services. These services vary slightly from provider to provider, but generally include regular calls or visits to the family for at least one year following the patient’s death.

Many hospice providers have a yearly service for family members, where they can speak about their loved ones and also talk to other families about their similar experiences. Some programs, such as Willis-Knighton, have regular support group meetings for the families of those who have lost loved ones.

Merritt said the families’ needs are assessed and, at times, that leads to more involved bereavement care being needed.

“If they are grieving appropriately, then we would stay in touch with them every couple of months by phone or mail,” she explained. “If we see that they are not grieving appropriately, then we will put them in contact with whatever resources they need, whether it be a licensed counselor, or our chaplains will meet with them and counsel them if that is (what) they choose. We just make sure that they are handling the death appropriately.”

Both home health care and hospice care can greatly improve the quality of life for persons in need, and can also be heaven sent for their families. Knowledge is power and with this additional information on these services, individuals can hopefully take charge of the manner in which they and their loved ones both live and die.