INTRODUCTION

Symptom control is the foundation of good hospice care. It is impossible to address the problems of mental, social and spiritual anguish without first releasing a person from constant physical discomfort.

In general medicine symptoms have diagnostic usefulness, but in advanced disease symptoms become functionless. Good symptom control is important at all stages of care, but becomes particularly important when it is all we have to offer.

Symptom control is best achieved in the context of team care. A dying person has complex needs, and it takes a team of professionals (and volunteers) to help meet them all. The patient may not label his problems as physical, emotional or spiritual, but is often desperately seeking simultaneous help on all these fronts. In a good team, everyone is aware of the importance of physical comfort as the foundation of this work. For example, it may be the team’s social worker who reports that when she saw the patient at home he still seemed to be in pain. The next step is an immediate reassessment of the patient by the doctor or nurse.

Team members include doctors, nurses, social workers or psychologists, clergy, and other professionals, often including physical, occupational and diversional therapists, dietitian, pharmacist, and if possible, art and music therapists. Well trained volunteers are a very valuable part of any team, provided they are considered as full members, and have continuing liaison with, and supervision from, the professionals.

Since team care is so important to both patients and professionals, informal teams must be built where no formal structures exist for consultation and support. Teams must also identify and educate key health professionals whose help may occasionally be needed: a radiotherapist who understands palliative techniques, an orthopedic surgeon willing to operate promptly to fix fractured limbs, an anesthesiologist with a special interest in nerve blocks, a dentist, an optometrist, etc.

Supporting and educating family members is an essential part of symptom control. When a patient is at home, the family observe, witness and often cope with the physical symptoms. We often expect so much of carers, who apart from new roles, extra pressure of work, adjusting to loss (and physical exhaustion too very often) are usually expected to help with complicated regimes of medication.  When caring family members are in partnership with the professionals, symptom control works very well in a home setting.

Patients with advanced cancer have many complex needs and can benefit from the expertise and support of a large number of professionals. It follows that team care by a team of professionals and volunteers is an effective model of care, provided it is well coordinated. However, good communication among busy professionals is often difficult to achieve. There is danger that a doctor in doing his best for a particular problem may not be acting in the patient’s best interests, for example, admitting a terminally ill patient with jaundice for a biliary bypass procedure when the priority for the patient is to spend his last days at home.

In Britain, specialist nurses (often called Macmillan nurses) acting as key workers overcome many of these problems by coordinating care and improving communications and liaison among professionals. They also offer expertise in controlling symptoms, and in family counseling. In the United States, experienced hospice nurses, visiting nurses or oncology nurses can often serve the same important role.

It is nurses who have the most contact with the patient. One young man of 38 with advanced abdominal malignancy made the point to me when he said:

“The difference between being in St. Christopher’s Hospice and being in the hospital is that when I was in the hospital, it would take ages for them to do anything if I got pain. They had to call a doctor, and it always took so long. But if I get pain here, the nurses deal with it right away.”

In British hospices, the nurses are educated in the basic skills of prescribing, and are trusted to increase the dose of morphine when necessary. The dose is ordered by the doctor as a range – for example, “10mg to 20mg morphine every 4 hours” – meaning that the patient is on 10mg regularly, but the nurses have the option of increasing to 20mg. When the doctor is next contacted he will be asked to re-assess pain control, and if necessary change his order to “20mg to 30mg morphine every 4 hours”. If this simple rule were adopted more widely, it would reduce unnecessary cancer pain considerably - but it depends upon investing time and energy to educate key nursing staff in the basic skills of using morphine, and then trusting them to teach and supervise other nurses.

Symptoms can usually be quickly controlled once a patient is admitted to an in-patient hospice. One reason for this is that the doctor on duty and the nurse in charge review all drug charts and patient orders together every day. For 20 in-patients this routine discussion usually only takes 20 to 30 minutes. It gives the doctor accurate feedback on whether medication is proving effective, whether it needs changing in dose, or whether another treatment needs to be considered. Again, if this simple procedure were adopted routinely, a good deal of unnecessary physical suffering would be avoided. In hospice home care, similar benefits would accrue if the home care nurse and the doctor actually talked together daily, however briefly.

Why are physical symptoms often managed so badly? Why is something so straightforward still often ignored, or done half-heartedly or ineffectively? One reason is because it is embarrassing and upsetting to talk to a patient if you feel, as a doctor or a nurse, that you have somehow failed.

What is the answer? Teaching young doctors and nurses (and older ones, too!) about symptom control empowers them again to be able to help these patients and dispels much of their sense of failure. It gives them some control over the situation and gives them expertise they can still offer. They then discover that patients are much more realistic (and often much more accepting of disability or death) than they are. They discover that patients will say “I realize you can’t cure me, doctor, but if only you could get rid of this pain”. They discover that these patients are hoping for kindness not cure, and that relieving a person of physical discomfort brings genuine gratitude out of all proportion to the skills involved. And they discover that it is satisfying to care for terminally ill patients, that in fact there is a great deal that can be done to help them. They discover, to their surprise, that caring for patients can be just as rewarding as curing them.

The author and publisher have taken precautions to ensure that the information in this book is error-free. However, readers must be guided by their own personal and professional standards of good practice in evaluating and applying recommendations made herein. The contents of this book represent the views and experience of the author, and not necessarily those of the publisher.