Patients have the right to refuse any treatment, but it's frustrating when they do, especially when we know we can help them. In ethical terms, the beneficence of the therapist comes up against the autonomy of the patient. With time in therapy counting toward a RUGs level, lack of participation also means less payment to the facility.
Some detective work is needed when the patient refuses, or put more politely, declines treatment. If possible, listen closely to the patient, validate concerns, then collaborate on a treatment approach. The patient may have difficulty discussing treatment with you because of any number of reasons including dementia, delirium, hearing loss, stress or anger. It can help to gather information from the family, nursing staff, physician and other therapists.
Reasons for Refusals
A serious reason for refusing is the presence of an underlying undiagnosed medical problem. This could be an occult fracture, a tumor, a heart condition or the start of an irreversible decline caused by the interaction of multiple medical problems.
For instance, there was a patient at an Oregon facility who had such severe pain in his right hip that he screamed with any movement. He could not bear any weight. The primary PT informed the physician immediately, but X-rays of the hip were not taken until the fracture lines had begun to round off, indicating that the hip may have been broken since a fall at acute care.
In another case, a young patient could not exercise his shoulder above 90 degrees and had constant pain even at rest. It turned out that he had a malignant tumor in his shoulder. If your patient's symptoms raise a red flag, let the nurse and physician know immediately. It is better to be wrong and feel foolish than to miss important warning signs of pathology.
Less serious but common conditions in the elderly may lead to refusals: constipation, poor p.o. intake, nausea, incontinence and shortness of breath are just a few. To overcome these refusals, it helps to inform the nursing staff so the constipation can be treated and the incontinence managed with a comfortable brief. Other problems interfering with rehab are insomnia, homesickness, worry and an inability to tolerate an uncertain outcome.
Most of our patients and their families are in a state of crisis, not usually a life or death crisis, but a change of life crisis. Loss of independence is daunting, especially with the possibility of a need to sell the family home. Financial worries are prominent as well.
Our frail elderly patients may also refuse treatment because they have limited energy, fear pain or falling, or simply get overstimulated when they interact with too many people in one day. These patients will usually agree to participate after being given plenty of reassurance and rest breaks. Exertion should be mild or moderate as perceived by the patient.
Premedication for pain and your help in advocating routine pain medication when appropriate is our duty as patient advocates.The patient with a fear of falling may do better if a familiar nursing assistant or willing family member is enlisted to help, even if only limited assist is needed for transfers and gait. The patient may trust you more after observing your guarding techniques with other patients in the gym.
When Patients Can't Communicate
More than half of our patients in long-term care have moderate to severe dementia. While they can often benefit from physical therapy, they need a different approach from patients with intact cognition. The most important thing is to give patients with dementia a pleasant experience during their therapy sessions. Patients may not remember exactly what they did the next day, but they will remember the pleasant feeling they had. It helps to smile, approach tasks slowly, practice error-free cueing, give plenty of praise and connect with whatever reality the patient may be expressing.
Since many cognitively impaired patients won't know what physical therapy is, or may have unpleasant memories of past treatment, try the tactic of approaching the patient as a professional visitor or a helper. With dementia patients it also helps to learn what activities are fun and interesting. One woman loved to go outside, so instead of standing at the parallel bars, the therapist helped her stand next to a raised garden bed.
Some patients have the ability to communicate but don't or can't talk about personal reasons why they refuse therapy. Some are privately enduring grief after the loss of a spouse or other loved one. Grief is fatiguing and disorienting and does not go away after a year. It is not the same as depression but can be serious when it leads to depression. Other patients may feel that their nursing home admission is the last straw in a chain of stressful events culminating in a loss of privacy and dignity.
Other patients who don't say why they want to go home urgently are missing their alcohol and cigarettes, or worried that their domestic partner is having an affair, or simply missing their dogs and cats. We're sure you've heard more reasons than we can list. It's a wonder so many people do participate in rehab. It's easy to favor the fun, hard-working patients, but we also have an obligation to attend to those who refuse us.
Emi Storey is a floating physical therapist for Consonus Rehab Services, based in Milwaukie, OR. An alumna of Stanford University, she has worked in long-term care for 15 years. Bob Thomas is a geriatric physical therapist and serves as president of Infinity Rehab, based in Wilsonville, OR. He lectures nationally for GREAT Seminars on rehabilitation for the frail elderly, and is an adjunct professor at Pacific University.