Asked & Answered

Decisions about palliative care must distinguish between a general palliative care approach and palliative care services, which often have limited resources.

A palliative approach to care is broadly aimed at ensuring comfort and quality of life for people with a life-threatening illness. Ideally, this approach is an integral part of supporting a patient and family throughout the entire course of the illness, even when there’s a possibility of a cure. Palliative care programs, on the other hand, have to focus their often limited resources, and so they target those in greatest need. Different regions and programs have their own eligibility requirements, but commonly people meet these criteria:

• a specific prognosis (often six months or less);
• a decision to focus on comfort rather than cure;
• an acceptance that resuscitation won’t be used when the illness brings a natural death.

Ideally, a person can get at least some elements of palliative care from the time of diagnosis. This can help with pain and other symptoms, or can help guide complex decisions. Palliative care may be central to treatment if the illness is aggressive and other treatment options are limited. Many palliative care programs offer early consultation to the oncologist or other specialists providing treatment.

In Canada, more comprehensive palliative care is generally offered to people who are expected to die within a certain amount of time, typically within six months. The goals of care then shift toward comfort. Eligibility criteria vary among programs or facilities.

Palliative care programs may not offer highly technical tests and treatments. The programs may require that patients and families not expect those tests and treatments or that treatments needing close monitoring, such as chemotherapy, are completed prior to acceptance to the program. Radiation treatments generally are less of a burden than chemotherapy and often are accepted by palliative programs. These criteria have more to do with the program’s resources than with the philosophy of palliative care.

Another common criterion in palliative care programs is an acceptance that resuscitation won’t be used. Cardiopulmonary resuscitation (CPR) is intended to restore heart function and breathing. When death is the natural outcome of the person’s underlying illness, that is, when the heart has stopped functioning as the result of the overwhelming burden of the illness on the body, then attempts to start the heart with CPR do not work. CPR generally is not offered by palliative care programs. If a patient expects CPR, then care likely will be provided in a setting other than a palliative care unit.

The referral process for palliative care varies also. Commonly it involves a referral form filled out by the patient’s physician or health care team. Sometimes the health care team waits for cues that the patient and family are ready for palliative care. Similarly, the patient and family may wait for cues from the team. This confusion and reluctance to talk about how things are going may cause unnecessary delay in providing palliative care.

It’s not a good idea to flush leftover medications down the toilet, as this pollutes the environment. It’s not a good idea either to keep medications at home, as this can be a safety issue.

It is a good idea to take leftover medications to a pharmacy, so someone there can dispose of the medications properly. Most pharmacies take leftover medications that you want to get rid of. A palliative or home care program in your area may have a procedure for disposing of leftover medications for you to follow.

Lack of appetite and the resulting weight loss can have many different causes. They can include illness, medications, treatments, pain, constipation or bowel obstruction, sores in the mouth, and anxiety or depression. It’s important to try to find the cause before trying a treatment.

Poor appetite may be caused directly by a problem in the digestive system, or indirectly by a symptom of the underlying disease. For example, pain, nausea and shortness of breath are common symptoms that can reduce a person's ability to eat or interest in eating.

Health care providers assess a patient’s overall condition to try to determine why someone isn’t eating. They may select one medication or a combination of medications to try to address this. Some medications can stimulate appetite; others can help control symptoms that may be reducing appetite.

Homeopathic remedies may stimulate appetite. Some such remedies, especially herbal supplements, interact with medications and can cause health problems. It’s important to consult the patient’s health care team before using any homeopathic supplement or treatment, especially when the patient is taking prescription or over the counter medications.

Some people continue to eat and still lose weight. When someone is very ill, the body’s processes turn to fighting the illness and not to regular functions such as maintaining weight and strength. So the nutrients in food don’t lead to improved strength or survival time. In the final stages of a terminal illness people lose their appetite and their sense of hunger. Often there’s nausea and physical discomfort from even small amounts of food. At this stage there’s more value in easing the patient’s discomfort than in trying to overcome a loss of appetite.

It may be that you're having good days and bad days, and it's very hard for anyone else to understand fully what that's like. This may be hard to express, but it's worth trying to let others know.

People usually ask “How are you doing?" out of habit or courtesy. When they ask this, feel free to tell them. Your response may stop conversation or it may pave the way for further discussion. Unfortunately some people can be very uncomfortable talking about your wife's illness and how you are doing. At least you’re making them aware of what your life is like. Some people genuinely want to know how you’re doing. Your answer may lead to more discussion and perhaps support. Either way you're being true to yourself and not hiding your feelings. You may be surprised at how many people are relieved to have you talk about your struggle and how you’re feeling.

People on the other side of the conversation also find it hard to know what to say. Usually they're afraid of saying the wrong thing and upsetting a friend. Honesty from the outset helps both of you past this first awkwardness, and everyone feels relieved that it’s okay to talk about your wife instead of pretending that everything's fine.

Remember that your situation is difficult. It’s natural not to know how to deal with everything around you, including talking to others. Think of your honesty as opening a door. People can choose to enter or not. At least you’ve opened the door and invited them in, instead of keeping it closed and never knowing what might have been on the other side.

The progression of cerebral palsy varies a great deal. In general, however, people with cerebral palsy have some common experiences in the final weeks or months:

• Decreasing strength and energy
  This causes decreasing mobility, communication, alertness and ability to breath and cough. Usually it’s not a cause of physical distress. Rather it’s a gradual fading, which eventually results in less time awake and more time asleep.
   
• Decreasing appetite and eating
  As with people in advanced stages of any illness, people with cerebral palsy become less active and so need fewer calories. They also lose the ability to process nutrients, and can become uncomfortable if they’re made to eat. It’s helpful for caregivers to understand this, as part of the final stages of an illness.
   
• Decreasing lung strength and function
  The lungs may no longer be able to expand fully. Scoliosis, a sideways curvature of the spine, may constrict the chest; or a person’s general weakness may prevent normal breathing. This results in poor coughing and clearing of secretions, which in turn brings a risk of infection.

People who experience shortness of breath may find relief with a range of measures:

• Medications
  Opioids seem to reduce the effort of breathing and block distressing signals of air hunger and pain. Oxygen may also help. Anxiety medications may be used to ease distress that can aggravate breathlessness.
   
• Air movement and temperature
  Breathing can be eased by using a fan or opening a window to circulate air, and by keeping the air in the room cool and less humid.
   
• Body position
  Some positions can ease breathing, typically sitting propped up or on one side.

In the final hours or days of life, people almost always are less alert. Often a chest infection develops. Pneumonia is a serious complication and can be the reason that death occurs. With attention to comfort, this stage can be a calm, gradual slipping away. If there is any pain, restlessness or shortness of breath, they can be controlled with medications such as opioids, sedatives or medications for anxiety.

It is useful to discuss possible developments and treatments with the health care team. Such discussions can be very difficult for a family, but it helps to develop a plan for dealing with what may happen before it occurs. If the patient is conscious, communicating, and old enough to understand treatment decisions, then the person may want to be part of these conversations.

In people with cancer, swelling of the stomach or abdominal area can have a few different causes.

• Fluid may collect in the area of the body containing the abdominal organs. This fluid is called ascites. It may result from the tumor causing the body to produce more fluid, or the tumor may be blocking the normal flow of fluid through the lymph and other body systems. Ascites can make someone feel bloated, uncomfortable and short of breath. If this does not bother the patient, it can be left alone. If there is discomfort, then the fluid sometimes can be drained. The draining of ascites from the abdominal cavity is called paracentesis. At times, medications can help the body eliminate the fluid. The medications often are not that helpful, because it’s not that there is too much fluid in the body, rather it is just collecting in the wrong places.
   
• Sometimes the bowels do not empty well. Stool may build up and gas may cause bloating. This can be due to constipation from opioids, from a general slowing of the bowels due to weakness, or a blockage of the bowel due to a tumor. In all these cases the patient usually has symptoms of constipation. Constipation from medication or slowed bowels can be treated with laxatives.
   
• As some illnesses progress, there can be swelling under the skin and in other body tissues. This is called edema.

Sometimes the causes of swelling can be treated and swelling decreased. For example, bowel functioning may be improved if a blockage is removed. At other times the cause of the swelling can’t be treated and it’s best to treat the symptoms associated with it. For example, if the swelling is causing shortness of breath, there are medications to ease this.

Morphine and other opioid medications generally have these side effects:

• Sleepiness
  Some level of sleepiness or drowsiness is common when the medication is first started or the dosage increased. It usually lasts about two to three days.
   
• Fatigue 
   
• Nausea
  This may occur with the drowsiness. It too tends to subside after a few days, as the body gets used to the medication or increased dosage.
   
• Constipation
  Opioids generally slow the movement of the bowels. Therefore it’s important to take laxatives when taking opioids.
   
• Confusion or hallucinations
  Opioids may cause, or contribute to, confusion or hallucinations. If these are unpleasant and disturbing it’s important to notify the health care team who may suggest a change in pain medications.

Some medications, such as steroids, can affect a person's physical appearance. Morphine and other pain relievers do not. Any visible changes in someone taking morphine are usually related to the illness itself and its effects on the body. These may be from the general effects of the illness, or other effects, such as the impact of certain types of cancer tumors. Most cancers lead to decreased appetite and ability to eat, as well as ongoing weight loss. These eventually affect someone's physical appearance and capacity for activity.

There are several options that can be considered for pain relief with bone pain.

Tylenol® is the brand name of acetaminophen. It’s a good painkiller for bone pain, but it may not be strong enough to relieve completely the pain of cancer in the bones. The maximum dose of acetaminophen is 4,000 mg a day. It’s very important to check with the physician before taking a dose close to this upper daily limit. Doses near the maximum may be unsafe, as they may affect the liver or cause other serious problems.

Anti-inflammatory agents are often used for bone pain, but they may have serious side effects such as kidney damage and intestinal bleeding. There is no good evidence that they’re more effective in relieving bone cancer pain than Tylenol® or low dosages of opioids. While serious side effects are uncommon, the physician prescribing the medication needs to consider all the risks and benefits of these types of medications for a given situation.

If a regular dosage of Tylenol® is not effective, then a low dosage of an opioid is usually added. As a first step, this is often done by using Tylenol with codeine. This can be Tylenol® #2 or Tylenol® #3. Both contain a combination of acetaminophen and codeine. Codeine is called a pro-drug. This means the body itself changes the codeine into the effective drug, in this case morphine. Some people’s bodies don’t have the capability to make codeine into morphine, and in such circumstances it’s important to use a different pain medication.

If someone is taking regular dosages of Tylenol® #3 and still feels discomfort, then it is usually time to start taking morphine or something similar. For many people, this is a frightening concept, but it is useful to realize that codeine is really morphine in another form. People taking codeine convert it to morphine in their bodies, and have adjusted to morphine already.

Other pain relief options may depend on the tumor involved. Some tumors start in the bone, but more commonly in adults the cancer starts somewhere else and spreads to the bone. Radiation therapy, hormone therapy, chemotherapy and medications called bisphosphonates all may help relieve bone pain. Discussion with the health care team can determine the best option for each person’s circumstances, as there are many factors to consider.

Any time someone is using opioid medications (including codeine), there needs to be attention to the bowels. Constipation is almost always an issue, and laxatives such as docusate and Senokot® need be taken while on opioids.

Many people worry about the use of morphine in palliative care. Morphine and other medications in the morphine family, such as hydromorphone, codeine and fentanyl, are called opioids. These medications may be used to control pain or shortness of breath throughout an illness or at the end of life.  Patients and families sometimes worry that opioids will speed up the dying process.

Morphine is sometimes used when a person is in the advanced stages of illness, and his or her overall condition is declining. If the person is experiencing moderate to severe pain or shortness of breath, his or her doctor will often prescribe morphine. This opioid helps maintain the person’s comfort throughout the illness and up to the time of death. The person declines because of the illness with or without the morphine.

When a patient is receiving regular pain medication such as morphine in the final hours or days of life, there is always a “last dose”.  To family at the bedside, it may seem like the drug caused or contributed to the death, especially if death occurs within a few minutes.  However, this dose does not actually cause the person’s dying.  It is simply the last medication given in the minutes or hours before the death naturally occurs.

We know that morphine and other opioids are not a factor in the death of a person with advanced illness. The following information explains why:

• There is no evidence that opioids such as morphine hasten the dying process when a person receives the right dose to control the symptoms he or she is experiencing. In fact, research suggests that using opioids to treat pain or shortness of breath near the end of life may help a person live a bit longer. Pain and shortness of breath are exhausting, and people nearing the end of life have limited strength and energy. So, it makes sense that treating these symptoms might slow down the rate of decline, if only for a few hours.
   
• If a person has never received morphine, the initial doses given are low. They are gradually increased to relieve the person’s level of pain or shortness of breath. After a few days of regular doses, the body adjusts to the morphine. The patient becomes less likely to be affected by morphine’s most serious side effect—the slowing of breathing. It would take a large dose increase over a short time to harm someone. Morphine doses are increased gradually and only as needed to maintain comfort.
   
• The last dose is the same as the doses the patient has previously received and tolerated. The way the medication is given might change when someone can't swallow any longer. If the medication needs to be given by a different route, the dose is calculated to equal  the amount  previously given by mouth.
   
• There’s a difference between natural dying and dying from too much morphine. When someone has received too much morphine, he or she usually can’t be woken up. The person’s breathing becomes very slow and regular. Sometimes only one or two breaths are taken in a minute. The person also appears calm and comfortable.

In the last few hours of the natural dying process, a person’s breathing becomes shallower and faster than normal.  The breathing muscles become weak like all the other body muscles.  When the breathing muscles are weak, extra muscles help out. It may look like the person is working hard to breathe, but does not always mean that they feel short of breath. The person’s breathing pattern often becomes irregular with pauses. These pauses are often followed by a few fast and deep breaths. The person dies when he or she does not draw a breath again after a pause.

These changes in breathing are a sign that the control centre for breathing is failing. The person may seem to be working hard to breathe, but this is a natural and normal response.

If there are concerns about increased rate and work of breathing, gasping for air, and that the person is distressed, we know that morphine is not a factor in the dying process. Instead, this suggests an ongoing need for giving the person additional regular doses of morphine to relieve distress.

Morphine and other medications in the morphine family, often play an important role in maintaining the person’s comfort throughout an illness and the dying process.

See also:
Pain
Assessing comfort at end of life (1 min 51 second video)
Tips for Talking with Someone Who is Dying
When Death is Near

A physician’s role in caring for family members is integral to providing care to the patient, and continues from diagnosis, through the disease trajectory, treatment, end-of-life care and bereavement. Understanding how family members grieve and what can help them is also important.

During the illness, the physician plays a key role in connecting the patient and family to services as required, such as home care and hospice palliative care. Hospice palliative care, in turn, helps with symptom management, and offers emotional and spiritual support to the terminally ill person and the family in bereavement. During this period of caregiving and anticipatory grief, the family receives needed support and establishes connections that often continue after the patient’s death.

Physicians can play an important role after a patient’s death by telephoning, arranging an office visit, or sending a card or information package to the family. These opportunities allow the physician to communicate basic information about the grief process, link family members to additional services and information, or provide contacts for local bereavement resources. Many hospice organizations have developed a card or information package that physicians can mail to the family.

If a physician has communicated with the family about grief resources after a patient’s death, this often encourages family members to seek help if needed and not feel alone in their grief. Knowing that such grief resources are available is especially important when the reality of the loss sets in, which often occurs about three months following the death. This often coincides with when friends, family and colleagues may (mistakenly) think that people should be “over it” and ready to move on.

A smaller percentage of individuals may experience complicated or more complex grief, the symptoms of which may not be evident for months or years following the death. It is important to keep in mind that in complicated grief, persistent longing for the deceased is both distressing and disruptive to daily functioning, and extends for longer than six months. Physicians should watch for the following symptoms which are disruptive in an individual’s life and may signal complicated grief:

• having trouble accepting death;
• being unable to trust others since the death;
• harbouring excessive bitterness or anger about the death;
• feeling uneasy about moving on with one’s life, such as forming new relationships;
• feeling emotionally numb or detached from others since the death;
• feeling life is empty or meaningless without the deceased;
• feeling the future holds no meaning or prospect for fulfillment without the deceased; and
• feeling agitated, jumpy or on edge since the death.
  

Understanding that bereavement care starts during the illness and caregiving period is important to a family. A family physician is in a key position to recognize those who may be at risk of developing complicated grief and connect them with additional help.

References

McGrath P, Holewa H, McNaught M. Surviving spousal bereavement: insights for GPs. Aust Fam Physician. 2010; 39(10): 7803.

Cairns M, Thompson M, Wainwright W. Transitions in Dying and Bereavement: A Psychosocial Guide for Hospice and Palliative Care. Health Professionals Press; 2003.