We are continually being told that the major health care problem of older persons involves the control and management of chronic disease. Yet, our health care system is organized and financed around acute illness with very little attention given to assisting patients in coping with chronic health needs. Most health care personnel, including nurses, are employed in hospitals or other institutional settings. Although home health care is expanding, more care is being offered in ambulatory settings, such as clinics and adult health day centers, there is still a strong need for more focus and attention on the care and management of chronic disease. We particularly need nursing research on patient attitudes towards chronic disease, and patient compliance with suggested treatment regimes and methods patients have learned in coping with these conditions. In order to illustfate this, I would like to share a few personal experiences.
For over 30 years I have been interested and actively involved in Gerontological Nursing Practice, mainly as a nurse educator. I am now frequently introduced and referred to as a "pioneer" in the field, having been Chair of the First ANA Committee on Standards of Gerontological Nursing Practice. The word "pioneer" sometimes makes me realize I am getting older, but I do not consider myself old or elderly even though I have passed my 70th birthday. However, none of my professional background ever prepared me for coping with the chronic conditions that I now face.
For many years I have been under episodic treatment for mild ashthma, arthritis, glaucoma and a hiatal hernia. Recently I have added osteoporosis to this list. I have always considered these conditions mild to moderate nuisances that usually responded to symptom control. However, as one ages, these chronic conditions can slowly but gradually creep up and finally the body revolts and says stop, look, and listen.
A little over five years ago, I battled with a severe episode of atelectasis and pneumonia following abdominal surgery and was amazed at how long it took me to recover. My internist referred me to a pulmonary specialist and with his assistance, I thought I had everything under control. The full seriousness of my situation hit me like a rock about two years ago. I developed a respiratory infection and did everything my pulmonary physician had advised but arrived in the hospital in both pulmonary and cardiac failure. While I was in intensive care, I vividly recall hearing my doctor say to the nurse "She's a tough old gal, she'll pull through this OK."
Four months later I was referred to a pulmonary rehabilitation program. The pulmonary nurse in charge of the program told me that I had the most well organized case of denial in operation that she had ever seen. Slowly but gradually the truth hit home and I had to admit that she was right. I had better start facing reality. I can't say enough in praise of my pulmonary rehab program and must admit that I now know more about COPD than I ever cared to know I wish every patient with similar problems could benefit as much as I did from this experience.
I now follow my prescribed regime faithfully including at least a half hour of walking every day. My pulmonary physician and I have reached an understanding that I am more interested in the quality of my life and I still continue to travel but take shorter trips and plan them more carefully. It is considerable trouble to arrange for oxygen while traveling but is well worth the effort. Last June I thoroughly enjoyed my trip to the ANA Convention in New Orleans and took in the World's Fair as well as considerable sight seeing, arriving home tired but healthy.
Most health personnel only see patients during an acute episode of their illness and very little attention or concern about the social and psychological impact of chronic disease is displayed. In the hospital, most decisions are made for the patient but how well is the patient able to cope with their own decision making when they return home? The budgeting of time and available energy is always critical for persons with chronic conditions. Information is needed about what to expect and how to recognize and handle crises. Health education must be a continuous ongoing process with referrals to community groups that can help. It is most difficult to have family and friends understand the limitations imposed by chronic conditions.
My plea to nurses is to please listen to your patients. What are their goals and expectations from treatment? What factors are inhibiting their compliance with prescribed regimes and self care activities? What are their hopes and fears of the future? How much does the patient know about his condition or how much does he really want to know? Since most care for chronic disease is offered by home health nurses, how about more exchange between hospital and home health nurses? In your assessments, look for your patients' strengths instead of focusing on disabilities and weaknesses. Remember old age Is not for sissies. Hopefully you will be there yourself before you realize it.