Brain / Central Nervous System

From what you describe, your brother is showing signs of confusion. By understanding more about confusion, you can better understand what he is going through and what can be done.

Confusion occurs when the brain is not working properly. Confused people often have problems remembering, paying attention, speaking, thinking, and understanding fully what is going on around them. Confusion can seem to come and go. This may explain why your brother seems fine at times, and why sometimes he does not make sense.

People with a serious illness often become confused. Many factors can contribute to this, and it is not always possible to determine one exact cause. These are some common factors that can cause confusion:

• infection,
• medications,
• low levels of oxygen in the blood,
• pressure on the brain caused by tumor or injury,
• chemical imbalances in the blood,
• pain,
• decreased functioning of all the body organs as a person nears death.

People who are confused often say or do things that are out of character. It is common for confused people to feel threatened by others and by changes in their surroundings. They may be reluctant to trust family, friends and caregivers, and they may think others are trying to harm them. These paranoid thoughts may be considered a form of self-protection. If someone cannot sort out the world any longer, it is safest to consider everything a threat. In this state, people can say or do things that are hurtful to people they know.

Confused people also can misinterpret things. For example they may think a coat rack is a person, or that clothing on the floor is an animal; these are called illusions. At other times, people can experience hallucinations, that is, seeing, hearing, or feeling things that don’t exist at all. Someone having hallucinations can be frightened, or comforted or not distressed at all. Sometimes people see visions of relatives who have died, or who are living but not actually present. Confused people may become restless, anxious, agitated and have trouble resting.

Confusion can be distressing both to your brother and to you. Like many relatives of confused people, you may say "This isn’t my brother." You may feel hurt by some of what he says or does. Your brother’s words and actions may be so inconsistent with who he was before he became confused that you may feel you’ve lost your brother, even before he dies. It’s important to remember that what you’re seeing is the result of changes in the way his brain is working. Your brother is not in control of how he’s thinking or behaving. His confusion is a part of his disease; if he says or does things that are strange, this is not a reflection of his feelings for you.

Your brother may become more comfortable if he has familiar things around him. It may help to put some pictures of family and things he enjoys near his bed. A calendar or clock can help him keep track of time. If your brother is having hallucinations that are comforting or at least not frightening, it’s better to acknowledge that they’re comforting, rather than to try to re-orient him to reality. If your brother seems restless, frightened or threatened, it’s usually best not to contradict him. Disagreements or arguments may make him feel more threatened. It’s best to acknowledge the distress he must be feeling and to assure him you’ll work with him to try to sort things out.

It’s important to let the health care team know what you’re seeing. It may be possible to investigate the cause of the confusion, and there may be medications to reduce the anxiety or restlessness that it causes. If the health care team knows what’s causing the confusion it may be possible to treat the cause.

It can be painful to question whether your brother knows who you are and what you’re saying. There’s no way of knowing how much people hear and process when death is near. We do know, however, that hearing is usually strong, even near death. It may be very meaningful to speak to your brother whether he seems alert or not. You or other visitors may feel the need to do or say something at his bedside. Often, though, the presence of family or friends near the end is more important than what’s done or said. Families often just go on visiting, reading, laughing and joking, telling stories, or watching television, in other words, being a family. This may well be what pleases your brother most, knowing family is present and that you’re supporting each other.

Someone with brain cancer can expect different kinds of symptoms, all of which change as brain cancer progresses. There’s likely to be an overall decline, which affects the body as whole. There also may be an effect on a specific area of the brain or on the whole brain, which may be caused by swelling and the tumor.

Different areas of the brain control different body functions. A tumor in an area of the brain associated with a certain function will affect that function. For example, a tumor in an area that controls speech will affect someone’s ability to talk. Such effects are among the early symptoms of brain cancer and often lead to its diagnosis. As the tumor grows these symptoms become more obvious.

The effect of a tumor and swelling on the whole brain affects the general functioning of the brain. As the cancer progresses it may produce these symptoms:

• increased sleepiness;
• decreased ability to move around;
• trouble speaking or understanding conversation;
• loss of memory and especially the ability to form new memories;
• impaired judgment, especially the ability to judge how much help one needs to get around;
• weakness, which may affect only one side of the body;
• seizures;
• headaches;
• extreme mood changes.

Medications can help with some of these symptoms. Steroids are often used to decrease swelling in the brain and around the tumor. Anticonvulsants are used to manage seizures. Acetaminophen (Tylenol®) can be used to ease headaches. Occasionally stronger painkillers such as opioids are used, but the headaches usually are not difficult to control. Pain medications can be used for other types of pain, but usually pain is not a significant problem with brain cancer.

As coordination and alertness decrease, swallowing can become difficult. Difficulty with swallowing may cause secretions to enter the lungs, which may increase lung congestion. Eating may also become an issue. Often liquids are harder than solids to control and swallow. A liquid can spill prematurely into the back of the throat and cause coughing. Thickening agents, available in pharmacies, can be added to liquids to help swallowing. Speech-language specialists can help with swallowing problems as well as with any communication issues that may arise. Difficulties with swallowing, eating and drinking need individual solutions that make the patient comfortable.

When a person is having trouble swallowing, family members may worry that the person isn’t getting enough food or fluids. Yet, difficulty swallowing is only one factor that may be contributing to issues related to food and fluids. Commonly cancer patients lose their appetite and thirst. Medications such as steroids may increase appetite. If someone’s appetite is good, but the person has trouble swallowing, then ways must be found to satisfy hunger.

As brain cancer progresses, the possibility of falling is an increasing concern. People generally get weaker as any cancer progresses. With brain cancer there are added issues of balance, coordination and judgment, which may prevent a patient from asking for help. It’s challenging to prevent falling when both mobility and judgment are affected. It’s important to accept that a caregiver can only do what’s possible, and often it’s not possible to have someone at the bedside around the clock. You may want to ask for a physiotherapist or occupational therapist to assess the situation and offer advice.

Someone with brain cancer may experience symptoms that are common to most cancers generally, which affect energy, strength, appetite, breathing and responsiveness.

You may find that with children, active treatment of the disease continues, even with the knowledge that there may not be a cure. The course of illness in children can be very hard to predict. Depending on the illness trajectory, the amount of involvement from a home care or palliative care perspective may be limited at times.

Rural health care professionals are often uncomfortable caring for a child who is dying, as this is not something that happens regularly. These feelings need to be acknowledged, and accessing the resources available to you is important. It is crucial to work closely with the specialty teams at the health care facility where the child has received treatment. There should also be a pediatric palliative care team that is accessible to you, no matter where you are in Canada. These pediatric palliative care teams can help provide support such as phone or telehealth consultation for the family and health care providers, and assist in care planning and symptom management in order to help keep children in their home communities.

Family-centred care

Family-centred care is an important approach for all members of the health care team to follow when caring for the dying child and the family. A child dying at home creates a challenging situation that affects parents, siblings and caregivers.

With a young child, the parents are usually very involved in his or her physical care. Children usually prefer to have the assistance of parents because they are familiar. However, parental involvement affects what a nurse or health care assistant might do. Discuss with the family effective techniques that the health care team could use to approach their child. Also involve the family in deciding what services are needed and how they should be implemented.

Keep in mind that the needs of the child can be lost in efforts to treat the illness, and it is important to remind everyone about what is best for the child. Children usually have a keen understanding of their illness and that things are not going well. Open and honest communication is crucial. Having an outlet for the child to express his or her emotions, feelings and fears may be helpful. The developmental stage of the child is an important consideration here (see age appropriate assessment below).

During this difficult time, parents are trying to maintain various roles and may need extra support. They may feel pulled in many directions with work, caring for other children, and trying to maintain normalcy. They may also be facing financial hardship. Alerting the family to the federal government’s compassionate care benefit may help ease the financial burden a child’s illness may bring. You may also want to investigate if there are other local or provincial resources that can assist the family.

Siblings are another key part of the family you must consider when a child is dying. The day-to-day life of siblings can suffer because of a child's illness; they may have strong feelings about the child dying in the home. Siblings may feel anger and jealousy, and can exhibit behavioural problems. They may also feel forgotten or unimportant as the ill child receives so much of their parents’ energy and time.

Being aware of siblings’ feelings is vital for health care professionals and requires a time commitment on their part. Ensuring that siblings have someone to talk to and are aware of what is happening in the home is crucial. Normalizing siblings’ lives as much as possible should be a goal of the health care team and family. However, at times, this may not be possible, and the help of extended family and friends will be necessary to care for siblings.

Families may have questions about siblings being present when the child is dying or sibling attendance and involvement at the funeral. Families should let siblings have the option of how much they would like to be a part of what is happening. Some children want to be very involved, and others do not. Developing creative ways to involve siblings that respect their individual personalities is often the best approach. During the illness of the child and during bereavement, siblings may find support groups helpful if they are available in your area.

Symptom management

As with an adult dying at home, management and anticipation of a child’s physical symptoms are crucial. Therefore, a health care team must have medications available before symptoms occur. Preparing the parents to deal with these symptoms is also important. Make sure you have a plan to address any “what-if” questions the parents may have.

Preparation of the health care team and the parents should happen before the child experiences these expected symptoms. In the midst of a crisis, decision making can be difficult. Initiating these discussions may by hard, but they will help make everyone involved (family and health care professionals) more at ease. Of course, you may need to adapt your pain management plan as the child’s illness progresses, so it is important to encourage open communication from the start.

The medications used to manage symptoms in children are the similar to those used in adults at the end-of-life. However, when medications are ordered for children they are based on the child’s weight. Therefore, if there are significant fluctuations in the child’s weight, you should take that into account when assessing or reordering medications.

Age-appropriate assessment

Age-appropriate assessment is an important component of managing the care of children. The developmental stage of the child will influence how you approach his or her assessment. Young children, who are not able to fully verbalize what they are feeling, require astute assessment.

Five-year-olds who have been ill for a long time will likely be able to verbalize that they have pain, where their pain is and how much it hurts. They will likely not be able to rate their pain on a numerical scale, so you will need to use other methods of pain assessment, such as pain scales that use faces instead of numbers to show the degree of hurt. Other activities, such as colouring on the outline of a body where pain occurs, may also help to you determine where a child experiences pain.

Children this age will also withdraw from play or activity if they are experiencing pain or have other symptoms such as nausea. So asking parents about the level of activity their child is engaged in will also be important. No matter the age of the child, parents are often the key informants regarding his or her general health status, behaviours and medication use.

Bereavement support

Recognizing the impact that caring for a dying child may have is important for the health care team. Frequent case reviews, informal and formal support, as well as a death review are beneficial for everyone involved.

The family can also benefit from bereavement follow-up and you should discuss and offer this service if resources allow.

Here are a number of resources that provide excellent information about caring for dying children:

• The Canadian Network of Palliative Care for Children (http://cnpcc.ca) has helpful information with links to many resources.
• The Rainbows Children’s Hospice in the UK offers a practical resource you might find helpful: Basic Symptom Control in Paediatric Palliative Care. These guidelines include suggestions for managing the common symptoms experienced by children at end-of-life.