Chapter-11
PALLIATIVE CARE
(Comfort Care)
Death is an inevitable aspect of the
human condition. Dying badly is not.
– Hasting Center Report 2003- “Access to Hospice Care”
Palliative Care (from Latin palliare, to cloak) or comfort care is an area of healthcare that focuses on preventing and relieving the suffering of patients. Unlike hospice care, palliative care is appropriate for patients in all disease states, including those undergoing treatment for curable illnesses, as well as patients who are nearing the end of life.
A World Health Organization (WHO) statement describes palliative care as “an approach that improves the quality of life of patients and their families facing the problems 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, psychological and spiritual.”
More generally, however, the term palliative care” may refer to any care that alleviates symptoms.
Palliative Care:
• provides relief from pain, shortness of breath, nausea 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;
• Uses a team approach to address the needs of the patients and their families;
• Enhances the quality of life at the end-of-life.
While palliative care seems to offer a broad range of service, the goals of palliative treatment are concrete: relief from pain and suffering, psychological and spiritual care, a support system to help the individual.
Comparison With Hospice Care
In the United States, a distinction may be made between palliative care and hospice care. Hospice services and palliative care programs share similar goals of providing symptoms relief and pain management. Palliative care services can be offered to any patient without restriction to disease or prognosis (outlook of the disease), and appropriate for any illness. Hospice care under the Medicare Hospice Benefit (in USA), however requires that two physicians certify that a patient has less than six months to live if the disease follows it usual course. Outside the United States there is no such division of terminology or funding between palliative care and hospice care.
History
Palliative care began in the hospice movement and is now widely used outside of traditional hospice care. Hospices were originally places of rest for travelers in the 4th century. In the 19th century a religious order established hospices for the dying in Ireland and London. The modern hospice is a relatively recent concept that originated and gained momentum in the United Kingdom after the founding of St. Christopher Hospice in 1967. It was founded by Dame Cicely Saunders, widely regarded as the founder of the modern hospice movement.
The hospice movement has grown dramatically in the United Kingdom, Europe and in the United States in the recent years. In India, Mother Teresa and her organization Missionary of Charity – are well known worldwide for their hospice care. Hospice or Palliative care is now a worldwide movement. Hospital palliative care programs today care for non-terminal as well as terminal patients. Palliative care may be provided in the hospital, in the nursing home or at home. The most common venue – more than 90 percent – is the patient’s own home.
A recent study of 4500 terminally ill patients found that, on average, those who choose hospice care lived a month longer than those who did not. Yet hospice remains underutilized.
Assessment of Symptoms
One of the main aims of palliative care is to relieve symptoms-like pain, nausea, vomiting, shortness breath and fatigue. The goal is increasing comfort and lessening stress for the patient and the family.
One of the methods for assessment of symptoms is the Edmanton Symptoms Assessment Scale (ESAS). Eight symptoms: level of pain, activity, nausea, depression, anxiety, drowsiness, appetite and sensation of well-being are assessing on a scale of 0 to 10. On the scales, 0 means, the symptom is absent and 10 that it is of worst possible severity. The scale is completed by the patient alone, or with the assistance of a relative or a nurse.
Medications used for palliative care patients are used differently than standard medications, based on established practice. For example, in a regular patient, morphine which controls pain has to be used with great care as on overdose can lead to depression of respiration or even death. In a palliative care setting doctors are not worried about those side effects. Other examples include the use of antipsychotic medicines to treat nausea (the sensation of vomiting), convulsion controlling medicines to treat pain, and morphine to treat anxiety and difficulty in breathing (dyspnea).
Symptoms Control at the end-of-life
Some of the common symptoms at the end-of-life are – pain, breathing problem, digestive problem, fatigue, skin problem, temperature sensitivity and delirium.
A. Pain Control
Of the many symptoms experienced by those at the end-of-life, pain is one of the most common and most feared. However, this fear is unfounded as the majority of patients with terminal illness can get pain relief. Barrier to pain relief are numerous and pervasive. It is due to lack of education, misconception and attitudinal issues. The barriers are related to both physicians and patients.
Barrier Related to Physicians
• Inadequate knowledge of pain management.
• Fear of patient addiction.
• Low priority given to pain control.
• Poor assessment of degree of pain.
• Concern about regulation of controlled substances.
Barriers Related to Patients
• Reluctance to report pain.
• Reluctance to take pain medications.
• Fear of addiction or being thought of as an addict.
• Cost and availability of drugs.
Pain Assessment
Every person experiences pain differently. We cannot know when other persons experiencing pain unless they tell us. Self reporting is the only valid measure of pain. According pain specialists Dr. Mc Caffroy, and Dr. Pasero, “pain is whatever the person says it is, experienced whenever they say they are experiencing it.” At the end of life, many patients cannot communicate their pain due to dementia (forgetfulness), stroke, speech impairment, language barriers and other reasons. If the patient has any potential physical reason for discomfort (example – bed sores, operation even small one), they are considered to have pain until proven
otherwise. Pain can be assessed from 0 to 10 using the Edmonton Symptom Assessment Scale (ESAS) or Wong-Baker Scale. No pain is 0 and the worst is 10. According to WHO pain is considered mild if the score is between 1 to 3, moderate – 4-6 and severe if the score is between 7– 10. The World Health Organization (WHO) recommends a pain ladder for managing pain.
Mild Pain
Paracetamol (Acetaminophen) or a non steroidal anti-inflammatory drug (NSAID) such as ibuprofen.
Mild to Moderate Pain
Paracetamol, an NSAID and / or paracetamol in combination product with a weak opioid such as Hydrocodone, Percocet, Vicodin, or Norco.
Moderate to Severe Pain
Certain medicines may work better for acute pain, others for chronic pain, and some may work equally well for both.
Morphine is the gold standard to which all narcotics are compared. Fentanyl has fewer side effects. It can also be given via skin patch which is convenient for chronic pain management. It can also be injected. Oxycodone is used for serious chronic pain.
Opioids (related to opium) can provide a short, intermittent and long lasting pain relief depending upon the medication. Most opioids can be taken as tablet, capsule, liquid, skin patch, suppositories and injections. Commonly-used long acting opioids and their parent compound are: Oxycontin (Oxycodone), Exalgo (hydromorphon) Ompamaer (Oxymorphone), Methadone and combinations of Codeine+Acetaminophen, Hydrocodone + Ibuprofen and many more. Anti depressant and anti convulsant medications are also used for chronic pain. Chronic pain is one of the most commonly cited reasons for the use of medical marijuana Acupuncture, electrical nerve stimulation, cognitive behavior therapy, hypnosis and some other alternative therapy may help in pain relief but scientific evidence of their effectiveness is not conclusive.
Under treatment of pain is common. Now pain management is a new speciality in medicine. Pain can be managed using combination of drugs or interventional procedures (spinal block, nerve block etc.). In addition to medical doctors and nurses, a pain management team may often include clinical psychologists and occupational therapists. Physicians, nurses, and others working in a palliative care setting are usually well-versed in pain management.
The greatest gift physicians can give family members is to see that their loved one dies relatively pain free. If the physician is uncooperative in controlling pain, the patient himself/herself if still capable or the family, should insist on changing the doctor to one who will meet their needs.
B. Breathing problems
Shortness of breath or the feeling that breathing is difficult is a common experience at the end of life. The doctor might call this dyspnea (dis-NEE-uh). Raising the head of the bed, opening a window, using a vaporizer, or having fan circulating the air in the room may help. Sometimes, the doctor may suggest extra oxygen, given directly through the nose, to ease the breathing difficulty. People very near death might have noisy breathing called death rattle. This is caused by fluids collecting in the throat or by the throat muscles relaxing. But not all noisy breathing is death rattle. It might help to try turning the person to rest on one side. There is also medicine that can be given to help clear this up.
C. Digestive Problems
Nausea, vomiting, constipation and loss of appetite are common end-of-life problems. The causes and treatments for these symptoms are varied, but the doctors and nurses can help. There are medicines that can control nausea, vomiting, diarrhea and relieve constipation.
Losing one’s appetite is a common and normal part of dying. Going without food and/or water is generally not painful, and eating can add to discomfort. A conscious decision to give up food can be part of a person’s acceptance that death is near. Don’t force a person to eat.
D. Fatigue
It is common for people nearing the end of life to feel tired and have little or no energy. Keep activities simple. For example, a bedside commode can be used instead of walking to the bathroom. Instead of a shower, the person can be given a sponge bath.
Medical tests and treatments can be uncomfortable and can drain the strength of a person who is dying. Some tests may no longer be necessary and can be stopped after consulting the treating doctors. Expert suggests that moving someone to a different place, like a hospital, close to the time of death, should be avoided if possible. Without clear instructions from the family or advance directives hospitals are usually forced to provide unnecessary treatments and procedures like CPR, antibiotics and intravenous fluids.
E. Skin irritation
Skin problems can be very uncomfortable. With age, skin becomes drier and more fragile. If proper care is not taken, bedsores can be a big problem. A special mattress or cushion might help. All bed sores should be promptly treated. Gently applying alcohol-free lotion and frequent change of positions can minimize the risk of bedsores.
Dryness on parts of face, such as the lips and eyes, can be a common cause of discomfort near death. A lip balm could keep this from getting worse. A damp cloth placed over closed eyes might relieve dryness. If the inside of the mouth seems dry, giving ice chips, if the person is conscious, or wiping the inside of the mouth with a damp cloth, cotton ball, or wet swab might help.
F. Temperature sensitivity
People who are dying may not be able to tell you that they are too hot or too cold, so watch for clues. For example, someone who is too warm might repeatedly try to remove a blanket. If a person is pulling the covers up or even shivering – those could be signs of cold. Make sure there is no draft, raise the room temperature, and add another blanket. Avoid electric blanket because they can get too hot.
G. Delirium / Agitation / Confusion
Delirium, agitation and confusion are common symptoms near death. Some of the causes of delirium are drugs, electrolytes imbalances, low oxygen supply to the brain, kidney and liver failure and spread of cancer to the brain. Drugs which are not helping the dying person should be stopped. Massage, distraction therapy and other relaxation techniques may be helpful in reducing agitation.
Mental and Emotional Needs
Someone nearing the end of life who is alert might understandably feel depressed or anxious. Encouraging conversations about feelings might be beneficial. A dying person might also have some specific fears and concerns. He or she may fear the unknown or worry about those left behind. Some people are afraid of being alone at the very end. This feeling can be made worse by the under stable reactions of family, friends, and even the medical team. For example, when family and friends do not know how to help or what to say, sometimes they stop visiting and withdraw. Doctors may become discouraged because they can’t cure their patient and feel helpless. Some seem to avoid a dying patient. This can add to a dying person’s sense of isolation.
The simple act of physical contact – holding hands, a touch, or a gentle massage – can make a person connected to those he or she loves. It can also be very soothing. Try to set the kind of mood that is most comforting to the dying person. What has he always enjoyed? Some experts believe that music and soft lightening are soothing. Music might improve mood, help in relaxation, and lesson pain.
Spiritual Issues
Many people nearing the end of life may have spiritual needs as compelling as their physical concerns. Spiritual needs involve finding meaning in one’s life and ending disagreements with others, if possible. The dying person might find peace by resolving unsettled issues with family or friends. A counselor may be of some help.
Family and friends can talk to the dying person about the importance of their relationship. For example, adult children can share how their father has influenced the course of their lives. Grand Children can let their grandfather know how much he has meant to them. Family and friends who can’t be present could send a video or audio recording of what they would like to say or a letter to be read out loud. Sharing memories of good time is another way some people find peace near death.
Always talk to, not about, the person who is dying. When you come into the room, it is a good idea to identify yourself, saying something like “Hi, Bob. It is Mary, and I Sam, have come to see you”. Another good idea is to have someone write down some of the things said at the visiting time – both by and to the dying person. In time, these words might serve as a source of comfort to family and friends. There may come a time when a dying person who has been confused suddenly seems clear – thinking. Take advantage of these moments, but understand that they might be only temporary, not necessarily a sign of getting better.
Many people find solace in their faith. Praying, talking to someone from one’s religious community (such as a minister, priest, rabbi, or Muslim cleric), reading religious text, or listening to religious prayers and music may bring comfort.
Rights of the Dying Patients (The Patients’ Bill of Rights)
In order to plan for the best care at the end of life, it is important to understand your right as a patient. The majority of these rights are meant to ensure comfort and dignity at the end of life. These rights are based on common law. Some of these rights are:
• If you are no longer able to participate in medical decision making, you have right to have your proxy (agent) speak for you with the same authority that you yourself would have if you were still able to make decisions. The appointment of an agent (Durable Power of Medical Attorney or Health Care Proxy) ahead of time is essential if your wishes about end of life care are to be carried out.
• You have the right to have your pain relieved with sufficient medication and vigorous pain management.
• You have right to refuse all unwanted treatment.
• You have the right to refuse all nutrition and hydration.
• You have right to refuse and stop any unwanted treatment that has already begun. Legally there is no difference between discontinuing an already ongoing treatment and not having begun it in the first place.
• You have the right to refuse Cardiopulmonary resuscitation (CPR)
• You have the right to be fully informed of all treatment options available to you for end of life care.
• You have right to change doctors.
Although the above mentioned rights are well established and generally not controversial, they are often disregarded by doctors and hospitals, because patients and families do not realize what their rights are. (Wanzer) Dr. Jeanne Fitzpatrick and her lawyer sister, Ellen M. Fitzpatric, in their book “A Better Way of Dying” have written about protocol for compassionate care for the dying. I kind of like their two-page Contract for Compassionate. It is short, simple and covers most of the end of life legal decisional issues.
Imagination
However, something won’t change. People are going to grasp for treatments to keep from dying. Doctors are going to offer dying patients treatments to keep them stay alive, even if for only a little bit longer. The best solution to this ongoing problem is for the dying patients and their families to be well informed and well prepared (like advance directive). You should also know your rights as a patient. Don’t count on the medical establishment to protect your rights or read your mind.