Questions about Pain and Symptom Management
What is meant by “pain”?
How can a patient get relief from suffering and pain?
If pain continues despite treatment, where can we turn?
What are common physical symptoms at the end of life?
Who manages the pain and symptoms of a terminal ill patient?
How can psychological, emotional and spiritual suffering be alleviated?
What is meant by “pain”?
Pain is when it hurts so badly that it interferes with quality of life and usually daily functioning. Pain can express itself in many ways and be of many different origins. Besides the physical related to the disease, patients may suffer from social or psychological conditions that cause emotional pain, such as isolation, stigmatization, depression, existential pain, spiritual distress and the lack of hope. Severe emotional pain can increase the feeling of physical pain. Concerns about family and other relationships or financial worries can also be so overwhelming that they contribute to suffering at the end of life.
How can a patient get relief from suffering and pain?
The patient’s pain and needs for relief should be clearly stated to the physician. When a patient is suffering at the end of life, it is important to follow the patient’s wishes for pain relief.
With the medications available today, no patient needs to live at the end of life in excessive pain and discomfort. Almost all physical pain and discomfort can be alleviated and a patient has a right to request appropriate pain medication.
Morphine is often used to relieve the severe pain that some individuals experience at the end of life. This may be particularly true of patients with certain kinds of cancers. Physicians and patients are often concerned about using morphine and other opiates because of fear of addiction. This should not be a concern. Patients request and receive only the amounts of drug needed to alleviate their pain and they do not develop an addiction. The objective is to keep the patient comfortable and pain free. A conscious patient will often be given the opportunity to choose the dosage, through the use of a self-administering pump, so he can balance the level of alertness and comfort that suits him.
In addition to prescribed medications, discomfort may also be alleviated by complementary therapies, such as massage, music and art therapy, aromatherapy, Reiki, yoga, visualization and other non-medical methods of relief. Most hospices offer these services.
If pain continues despite treatment, where can we turn?
If the patient is not getting sufficient pain relief, a pain management specialist should be requested. A palliative care team may be helpful.
The palliative care team has a physician, specially trained in pain and symptom management, who is familiar with the newest pain relieving medications and how they interact with other drugs. This specialist is usually able to recommend a combination of medications that will help the pain subside and improve the patient’s quality of life. The palliative care team also includes a social worker and other professionals who may be trained in complementary therapies.
What are common physical symptoms at the end of life?
Each patient is different and experiences a particular disease in his or her own way. In addition to the possibility of pain, symptoms at the end of life may include fatigue, insomnia, drowsiness, lack of appetite (anorexia), constipation, shortness of breath (dyspnea) and nausea. The patient’s physician (or a nurse practitioner) can prescribe medication to alleviate most of these symptoms.
When the patient is close to dying and the biological systems are beginning to shut down, the withholding of food (nutrition) and liquids (hydration) may be the best way to relieve the patient from suffering. If the attending nurse or physician suggests this, family members need not be concerned that the patient is being deprived of foods, since the body is no longer able to process (metabolize) what is taken in. The patient will die of the disease, whenever that happens, but not of starvation.
Depression is not uncommon among the terminally ill. If depression is suspected to play a role in the patient’s suffering, the patient need to be assessed for this condition and appropriate treatment administered. The treatment may be in the form of drugs or counseling, or a combination of both.
Who manages the pain and symptoms of a terminal ill patient?
The patient’s primary care giver – usually a relative, close friend or aid – is often the first to learn about changes in the patient’s condition. He or she acts as advocate for the patient and asks a health care professional for help in managing the patient’s discomfort and suffering.
The patient’s personal physician has the primary responsibility for assessing the medical needs of the patient and for prescribing appropriate medications. If the patient is enrolled in a hospice program, the physician of the hospice program will assess the patient and prescribe the appropriate medication. Medications may be administered by a physician, a nurse practitioner, a nurse or, if appropriate, the patient herself or a family member who has received the appropriate training.
Hospice aids and home health aids are usually NOT authorized to give the patient medications but play an important role in keeping the patient comfortable. Keeping the patient clean and frequently changing bed sheets and bedclothes are an important part of this comfort care and a major contributor to the patient’s quality of life.
How can psychological, emotional and spiritual suffering be alleviated?
Family members, friends and neighbors often offer the primary emotional support for a dying person. Complementary therapies, such as yoga, massage, music and art therapy, aromatherapy, Reiki, visualization and other non-medical approaches may also help alleviate suffering.
Discussing the issues that cause concern and suffering with a professional may help.
Spiritual issues can be explored with a religious leader in the patient’s congregation or with a caring and understanding individual who may not subscribe to any particular religion. Explorations about the meaning of life and death may be especially reassuring for people who feel they have lost hope. Many congregations have staff trained specifically to help families in this area. Every hospice has a chaplain who is available for the patients in its hospice programs. The Westchester-End-of-Life Coalition can connect a patient or the patient’s family with caring and knowledgeable professionals of different faith-based groups in Westchester, or with spiritual care workers who are not connected with any particular congregation. For information contact info@westchesterendoflife.org
Family and practical care giving concerns may be discussed with a social worker. All hospice programs offer this service for the patients in their care. The Westchester End-of-Life Coalition can help direct you to a suitable program or person. Please contact, Susan Gerbino at sgerbino@westchesterendoflife.org
Financial and legal concerns, such as estate and tax planning, public benefits, guardianship, estate administration/probate, and trusts and estates, may be discussed with an attorney. Attorneys specializing in elder law are familiar with issues related to the end of life. To locate an elder law attorney near you, go to www.elderlawanswers.com and enter your area code.
Individual psychological counseling and support groups for those at the end of life and their families and caregivers are available through many organizations and agencies in Westchester. For a selection of resources, go to Counseling Services and Support Groups for the End-of-Life.