In this section, palliative care as it applies to multiple myeloma patients is discussed. The World Health Organization (WHO) definition of palliative care is comprehensive and universally accepted:
Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. Palliative care:
- provides relief from pain and other distressing symptoms;
- affirms life and regards dying as a normal process;
- intends neither to hasten nor postpone death;
- integrates the psychological and spiritual aspects of patient care;
- offers a support system to help patients live as actively as possible until death;
- offers a support system to help the family cope during the patient's illness and in their own bereavement;
- uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated;
- will enhance quality of life, and may also positively influence the course of illness;
- is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
Most large academic hospitals have palliative care teams made up of doctors, nurses, social workers, psychologists, and other specialists to whom patients may be referred to help manage pain and suffering, whether mental or physical. Typically, multiple myeloma patients live for many years and can have many potential complications, including bone pain, fractures, infections, and kidney disease. They may endure years of steroid treatment and deal with long-term anxiety and stress. In short, myeloma patients require support from a multidisciplinary team of specialists.
If you have symptoms that are impairing your quality of life and have not received a palliative care referral, you must request help. Symptoms might include bone and/or nerve pain, loss of appetite, constipation, insomnia, nausea/vomiting, difficulty breathing, extreme fatigue, bleeding, anxiety, or sadness.
Palliative care may be needed at any time during treatment, but is most often needed at the end of the disease course. When a patient has tried and exhausted the full range of approved and experimental treatments that are available to him or her, and the multiple myeloma has become refractory to each of those approaches, it’s time to weigh the possible benefits of continuing treatment against the reality of stopping. Each patient must make this decision for him or herself.
If the decision is made to stop active treatment and concentrate on relieving symptoms and improving quality of life, patients may be referred to one or more specialists for palliative care. Sometimes treatments used to control symptoms are the same as those used to treat cancer: a patient with bone pain might be referred to a radiation oncologist for radiation therapy. Stopping treatment does not mean that your quality of life should suffer. Patients who seek palliative care, sometimes in the context of hospice care, often live longer and with better quality of life than those who soldier on with therapy.