ORIGINAL ARTICLES

Home care in America

Jeanie Stocker¹

¹Homehealth Care Nursing Association

ABSTRACT
This article discuss the American history and the evolution of home health care that has taken place over the last few years. 
Key-words: home health care nursing; managed care; home health care 

Thank you for the opportunity to visit your magnificent country.  I am enjoying the beautiful landscape as well as the culture.  I also look forward to learning new lessons from fellow nurses and the people of Brazil.  I would also like to thank Profª Silvia Regina T. P. de Barros and Isabel Cruz for all their help in allowing me to be here today.  

I was asked to talk about home care in America and I will share a little of our history and the evolution that has taken place over the last few years.  But I do hope that there will be  time in the next few days that you can share your practices and stories with me as well.  

Health care in America is primarily a fee for service system instead of the socialized medicine model seen in many other countries.  There are many payment systems for health care, the main ones being private insurance, Medicare, Tricare, and Medicaid. Most working Americans have health care insurance that is provided for by their employer.  These services range from a basic fee for service where the insurance provider pays a percentage of the health care to a managed care model that dictates the services and providers it will pay for. 

Tricare is the military health care system.  While active duty military personnel have all health care needs provided for, Tricare provides additional health service coverage to the retired military community and their dependents. 

Medicare is the federal health care insurance for those people 65 and older and those with permanent disabilities.  Medicaid is for the poor of all ages and is funded and managed by individual states.  Both of these programs are funded through federal and state taxes.

Before I talk about home health nursing I must mention Florence Nightingale.  I am sure most of you have heard of her, and while she is called the founder of modern nursing I see her as a patron of home care nursing. Nightingale advocated for hygiene and sanitation, proper nutrition, and the maintenance of accurate statistics and data.  Her principles of nursing included; caring with empathy, maintaining confidentiality, and providing a therapeutic environment.  These basic beliefs are still important and remain the foundation of home health care nursing today. 

Home care has been in America since the first settlers arrived.  Since early health care coverage of maritime workers to physicians making home visits for a dinner or crops, the home health concept has been actualized and expanded upon. The first official home health agency opened in America in the mid 1800s and grew to 1100 by 1963. Today in America 3 ½ to 4 million people are served by traditional home health and Hospice benefits as well as alternative services. 

Medicare's enactment in 1965 greatly accelerated the industry's growth. Medicare made home care services, primarily skilled nursing and therapy, available to the elderly. In 1973, these services were extended to certain disabled younger Americans. Today the primary home health beneficiary is 65 or older and receives Medicare benefits.  These benefits provide for nursing, physical therapy, occupational therapy, speech therapy, social services and personal care support. Services are also available for the very young and other adults.  Most insurance companies provide home health services but they are not at the level provided for by Medicare.  Medicare and Medicaid today remain the primary payors of traditional home health and hospice services in America.  

Hospice services are provided to any person who is diagnosed with a terminal illness and has a life expectancy of 6 months or less.  Services are similar to home health but also include assistance with other medical needs such as medicine and medical equipment.  These services are covered under the Medicare benefit and by many insurance companies.  Today there are over 2300 Hospices in America serving almost half a million terminally ill patients. 

Americans also have access to many non-traditional home services.  Private duty nursing and support services provide long term care for those with the most critical conditions.  A similar program provides very basic services such as yard and home maintenance as well as transportation services. Home Medical equipment companies provide hospital equipment in the home ranging from wheelchairs, hospital beds, bandages, ventilators, and oxygen.  Many programs also provide emergency response systems such as Lifeline.  These systems allow the elderly to live independently in their home.  If they become ill or are in an accident they only have to press a button on a pendant to get someone to come to their home to assist them.  Home infusion services have also expanded over the last 20 years.  IV antibiotic therapy continues to be the key therapy but the services now include long term parental or enteral therapies for those who have critical nutritional deficits, chemotherapy for cancer patients, as well as hydration and anti-emetic therapy during pregnancy.   

Home care also supports alternative health care programs.  These programs are usually supported my volunteers and donated dollars.  Some of these programs include; Meals on Wheels which provides hot nutritious meals to the elderly and disabled in their home.

Parish Nursing Programs provide a nurse or health care advocate to provide early disease intervention as well as to educate the church community on health care needs.   

Although home care services are available for almost any health care need, the most common home health diagnoses seen in America include Congestive Heart Failure and other heart diseases, Diabetes, stroke, and orthopedic surgery follow up.   

Home Health services are also utilized for the young to allow them to remain at home instead of in an institution.  Care is provided for those with Spina Bifada, muscular dystrophy, as well as numerous birth defect morbidities.  Services have also increased for those with HIV and Hepatitis.  While routine services are available, many of the very young and most seriously ill need long-term private duty home care and IV therapy.  These services are not always covered by insurance and bring financial burden to many families. 

As I mentioned, Medicare is the primary payor source of home health services.  Since beginning in 1965 Medicare home health has grown at a rate faster than any other health care service.  In the 1980s the government tightened the reimbursement paid to hospitals with a prospective payment system.  In the 1990’s the American government recognized slower growth and considerable savings due to this new system.  This recognition along with concern of the growth in home health drove legislators to find an equal reimbursement system for home care services.  Home health grew from 1100 agencies in 1963 to over 10,000 in 1997. A new system was demanded and implemented in two phases. 

Prior to the implementation of the new program home health providers were paid based on approved cost, which occasionally were excessive and extravagant.  Services were focused on long term care instead of the promotion of independence and self disease management.  In 1997, the Interim Payment System (IPS) stopped the cost based reimbursement and introduced a capitated system.  This system paid a maximum per beneficiary payment for each patient regardless of the type or volume of service that was required.  IPS nearly crippled the home health industry and forced over 2300 agencies to close.  Although this did not prevent most beneficiaries from receiving home care services it did reduce providers by 26%, which limited choice as well as the amount of services available.  This interim system forced a paradigm shift from long term care of a patient to the promotion of self care.  It also led the way to the new prospective payment system (PPS) which is only 13 months.  Although this system has provided much needed reprieve from financial problems, it has introduced its own set of challenges.

The government realized that there was little valid comparable data that could guide them in appropriate financial allocations.  In order to obtain this information, a consistent data set was developed.  This set of 68 questions is required to be completed by a nurse or therapist every time a home health patient is admitted, hospitalized, discharged, recertified for services, or there is a significant change in condition.  This had increased the paperwork and non-clinical time in the home considerably.  This question set is called OASIS and is now mandated for all Medicare and Medicaid home health beneficiaries.

While PPS and OASIS provides better clinical and comparative data and a reduction in home health expenditures it has hurt the key provider, the nurse.  Nurses are becoming frustrated with the regulatory burden of home care and are leaving for more appealing medical sites.  Unfortunately, red tape and regulatory burden is found in all health care arenas.  Recently a study completed by the American Medical Association found startlingly documentation times in a variety of health care settings. For every hour of direct patient care a clinician must document an additional 37 minutes on a medical floor, an additional 45 minutes in a nursing home, an additional 53 minutes in home health, and a shocking 60 minutes in the emergency room!  We do not have enough nurses in America because they are to busy doing paperwork!

Home Health in America is high tech and high touch.  Many nurses use laptops computers to document vital signs, procedures, interactions, as well as required information.  This is a long way from the days of Mary Brekenridge.  She provided pre and post partum home nursing and the key skills she needed was the ability to ride a horse, build a fire, and live off the land.  Today’s nurses are providing intensive care nursing which requires keen assessment skills and complex procedure competencies.  They are also setting up computer based home monitoring units that obtain vital signs and clinical information.  This assessment is provided daily without a nurse and the data is then transmitted by phone lines or satellites to the agency. This new technology allows for daily assessments while freeing up nurses to see the sicker and more complicated cases.

But the most important aspect of home care is done with the hands and heart, providing complex procedures, teaching disease management as well as other services that make a difference.  Whether its IV therapy, peritoneal dialysis, wound debridement, or teaching a new diabetic how to give himself insulin, nurses are making a difference.  They are treating and teaching patients in the best environment, their home.   I have shared some of the history and details of home care in America, now I would like to take a few minutes and share some of our stories.

The Make A Wish Foundation provides a trip or special gift for those that are terminally ill.  A young boy and his mother went to Disney World for his dream trip.  He was scheduled to go home on September 11, the day of the terrorist attack on America.  The family were stranded in Florida with no money, no place to stay, and no immediate way home.  A local Hospice service was called to help.  They were asked to loan the young family $200 and a trip to the airport when it was OK to fly home.  Instead they were given a place to stay, palliative care, and $300 to help until they could return home.  The Hospice refused any reimbursement for the care of money.

Last Christmas the staff of a local home health agency found out about a young family with two children who had recently lost everything in a fire.  The staff provided coats and clothing to meet their immediate need but then went on to donate food, toys, and gifts for Christmas.

A home health aide in a small agency provided a bath and personal care to an elderly lady who lived alone.  She had very few bath cloths or towels and those she did have were not cleaned regularly.   The home care aide bought new washcloths and towels and washed the lady’s clothes for 6 months until her death.  No one ever knew about the generosity until after the woman’s death.

Nurses and other health care workers routinely provide clothing, medicine and many other items that home care patients do not have and can not afford to get.  Home care in America is high tech with computers, and complex with Medicare, regulations, and OASIS.  But more important it is about providing home care with a heart as I am sure you do here in Brazil.

There is also humor in home care:
When counseling the husband of an insulin dependent diabetic patient about pt's diet, the nurse told the husband that pt couldn't have fried pork chops, fried potatoes and corn on the cob in the same meal. The Husband replied, "Yes she can, her teeth are pretty good!"

Home care nursing is universal and full of hope, compassion, skill, and laughter. Thank you again for the opportunity to share about home care in America and some of our stories.  I look forward to hearing your stories in the next few days. Thank you and God bless you.

This lecture was presented at the Conference in the II International Home Care Nursing Symposim, November 2001, at the Nursing School, Universidade Federal Fluminense, RJ, Brasil 

Receiveid: 03/27/2002
Accepted: 03/31/2002