Abstracts of Annual Education Meeting on 25-Nov-2002
The Patient's Perspective
Eric Low, International Myeloma Foundation [IMF(UK)]
One of the most difficult challenges facing everyone involved in the care of someone affected by myeloma (patients, their families, friends, doctors, nurses and other caregivers) is to understand the point of view of the other people involved. Failure to do so can lead to strains in the relationship which can be unpleasant and counter-productive.
The purpose of this overview is to briefly look at some of the aspects of myeloma from a patient's perspective, outlining what makes the disease so hard to come to terms with, and then to describe some things that health professionals can do to maintain a good relationship and help their patients cope.
A diagnosis of myeloma is especially difficult to come to terms with, and the disease itself is difficult to live with, for several very specific reasons. These are:
- Myeloma is a relatively rare cancer. Most people hear the word for the first time when they or a loved one are diagnosed, so their understanding of the disease, its effects, and its treatment is very limited.
- Currently, there is no known cure, so treatments are intended to control the disease or relieve symptoms. This is a novel concept for many patients, but it is one which it is important to grasp if they are to hold realistic expectations of their treatment.
- For some treatments, it is difficult to predict the effects of a treatment in any particular patient. Many treatment decisions are a matter of probabilities. This uncertainty is another difficult concept for patients to understand.
- The complications and symptoms of myeloma can be traumatic and extremely debilitating, but virtually all treatments have potentially serious side effects. Understanding the balance between risk and benefit for each treatment option is important to making a balanced decision, but is a new idea to many patients.
Patients and family members dealing with a diagnosis of myeloma are confronted with a terrifying reality. It can be a wrenching confrontation with mortality. Very often, patients presenting with debilitating physical symptoms, such as pathological fractures, anaemia or infections, may also be dealing with a myriad of emotional, family and financial issues. Generally, this is not an ideal circumstance in which to make the very important decisions that patients need to make. The patient's state of mind can exacerbate the stress attendant upon treatment and can also exact a physical toll. Given these factors, attending to the psyche of the patient is a very important component of care and treatment.
Doctors and other healthcare professionals play an important part in helping patients and their families come to terms with this situation and to make treatment decisions. Steps need to be taken to try to understand the emotional issues affecting each patient and to use this understanding to individually tailor the approach to delivering care. Emotional issues can be every bit as diverse as the disease itself. Patients can have very different approaches to treatment. Some patients want to 'bury their heads in the sand' whereas others take a very active stance, wanting to 'beat this thing no matter what it takes'.
In addition, it is important to realise that each patient's role in treatment decisions and the criteria they apply tend to be quite different. Patients do not necessarily share their doctor's priorities in decision-making, nor do they place the same emphasis on different types of morbidity.
Assessing the impact of treatment on quality of life and the patient's sense of well-being is a very individual equation. For example, hair loss due to chemotherapy can have a more devastating impact on some patients' well-being than neuropathy or nausea. Treatments that require in-patient procedures can be an anathema to people with active professional careers or young children. Many patients look for treatments that allow them to self-administer much of the treatment (i.e. tablets or home injections) or receive home care. Other patients much prefer the reassurance of visiting the hospital for treatment. Where practical, doctors should be sensitive to these differences to achieve the best outcome and to strengthen the doctor-patient relationship.
Doctors too face difficult issues, firstly in recommending diagnostic and treatment options for which results generally cannot be assured, and secondly in deciding what to communicate to patients and how to convey it. The doctor is often in the position of having to persuade the patient to pursue what can be frightening procedures and treatments.
All parties face major challenges in dealing with the disease. Implementing techniques that foster communication and trust can be the key to achieving the best outcome.
The following is a brief outline of things that can be done to establish and maintain the patient-health professional relationship:
- Provide information - this can be a very powerful tool to strengthen the patient-family-doctor relationship. It can also serve to help people in negative emotional states get into more positive frames of mind. A diagnosis of myeloma and its attendant implications is too much for most people to take in at once, so giving patients the means to learn more when they want or need to is important.
- Listen, listen, listen - stop talking and listen to the patient. It is important. By listening one is conveying interest, legitimising the patient's suffering, and demonstrating that you are taking the patient's problems seriously.
- Be realistic and straightforward - presenting information honestly does not destroy hope nor increase fear.
- Avoid giving up hope - try to maintain hope in the face of a patient's physical deterioration because there is almost always something that one can do or say to make the patient feel more comfortable. The key is to focus on comfort as opposed to cure; in doing so, doctors will be less frustrated themselves.
- Treat complications energetically - this is especially true of intangible symptoms such as fatigue or pain.
- Try to understand patient denial, within certain bounds. Denial may be therapeutic and helpful. People face up to things in different ways and they do not always need to accept things. If they are able to, they will do so.
- Support each patient's strengths. Accommodate your approach to the patient's personality rather than using a "one-size-fits-all" approach.
- Maintain continuity of care. Patients should be seen regularly because consistency and continuity of care are paramount to their well-being. Each appointment is very important to a patient, so explaining a complicated history to a different doctor each time is not helpful. Assigning a regular contact nurse to each patient is a good way to maintain continuity.
- Where possible, accommodate the information needs of the family if they differ from those of the patient.
- Correcting misconceptions on the part of the patient can improve the patient's quality of life as well as helping with treatment compliance. It is often helpful to ask the patient 'What is your understanding of your illness?'
- The physical touch is important - a pat on the shoulder or a good firm handshake can be reassuring to the patient.
- Use the personal touch. A verbal or non-verbal expression of sadness or understanding at the patient's plight is often appreciated and therapeutic.
People who have myeloma and the people who care for them are routinely dealing with serious medical and emotional issues. Modest investments of time and attention from doctors and other caregivers to understanding patient/family perspectives, interpersonal dynamics, education and the provision of appropriate information can significantly strengthen the therapeutic partnership. In addition, it can dramatically reduce stress levels for all concerned.