Asked & Answered

Some of the possible causes of hallucinations in cancer patients are:

• medications, especially strong painkillers, such as morphine or Dilaudid;
• chemical imbalances in the blood, such as high levels of calcium caused by a tumor;
• infections;
• tumor that has spread to the brain.

It is important that a patient experiencing hallucinations be seen by a health care provider, so that the cause can be determined.

Families often have questions about eating and appetite when someone is ill. For families, the issue of food and eating involves much more than just the food. The whole experience of eating and fellowship is important. Also, feeding is seen as part of providing basic care for someone. Yet people who are terminally ill usually lose their appetite and don’t feel hungry.

It’s hard to resist trying to care for your father by helping him eat. If, like many people in advanced stages of illness, he doesn’t have an appetite, then it may be more valuable for you to care for him in other ways. This may include reading to your dad, helping keep his mouth moist, massaging his feet, or doing something with him that he enjoys.

Non-Hodgkin's lymphoma (NHL) is not a single disease. It’s a complex group of cancers that start in the body’s immune system. The diseases have similarities at the cell level, but they have different effects on the body and show different responses to treatment. A person’s experience with NHL will depend on the type of disease, its location and the treatments given.

NHL may progress slowly (low-grade lymphoma) or quickly (high-grade lymphoma). Low-grade lymphomas typically develop over several years. High-grade lymphomas develop more quickly, but they also tend to respond better to treatment. When a high-grade lymphoma doesn’t respond to treatment, disease progression tends to be quite rapid.

NHL is usually found in parts of the body's lymphatic system, such as the lymph nodes. It also can be found in the blood and bone marrow, and at times in the brain, chest, abdomen or other areas. The primary tumor may spread to other places in the body. The location of the primary tumor and of any metastases determines many of the possible symptoms. In general, the body organs or systems that have a tumor eventually fail to function properly. For example, someone with a tumor in a lymph node in the neck may eventually have a very visible lump on the neck that can interfere with breathing or swallowing. Someone with NHL in the brain eventually shows changes in mental processes. Someone with NHL in the chest may have trouble with breathing or circulation.

The type of treatment given to someone with NHL may also affect what someone experiences. Chemotherapy, radiation therapy, bone marrow or stem cell transplants are among the most common treatment options, depending on the disease. Each of these treatments may produce ongoing symptoms.

While these and other variables play a role in what happens with NHL, people generally experience these symptoms as the disease advances:

• Pain
  The tumor or the metastases can create pressure or an obstruction in an area, which produces pain. Pain medications are used to control the pain and keep the person comfortable.
   
• Infections
  Infections may be common if the immune system is not working well.
   
• Bleeding or anemia and related fatigue
  These symptoms may occur if the disease is in the bone marrow. They are treated with blood and platelet transfusions. In late stages of the illness, a patient may become exhausted by the effort to have the necessary blood tests and transfusions. As well, eventually the transfusions will not have the desired effect. At that point the patient and the health care team need to decide whether they will decrease or stop the transfusions.

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

The changes can be gradual, but crises can develop. People with NHL most often die from infections, bleeding or organ failure resulting from metastases. A serious infection or sudden bleeding can quickly lead to death, even if someone doesn’t appear very ill. For this reason, the end stages of life for people with NHL are harder to predict than for people with other cancers.

Almost all pain is controllable at all stages of an illness and at the end of life. It’s important to treat pain whenever it’s felt. There are many medications and options available. Dosages of some medications may be increased, or the medications may be changed. Several pain medications do not have an upper limit, so they can be increased if pain increases. These types of medications often are used when someone’s pain is tremendous, as is your brother’s.

Many areas in Canada have pain or palliative care programs and services. The experts in these areas can help with various aspects of care, especially controlling complex pain. They often have consultation services that your brother or his care provider can call on whether he’s at home or in a hospital. You may want to contact your brother’s health care team to find out if there’s a specialized service that can be called in to help control his pain.

Fentanyl patches contain strong medication and are placed on the skin to help relieve pain. The patches should be applied and removed as ordered by the doctor and only on the person for whom they were prescribed.

Pain patches should not be placed in the garbage! There is still medication left in used patches when they are taken off the skin. Used and unused pain patches may cause harm or death to adults, children and pets if they are misused or used by accident. It is very important that you safely store and dispose of all the pain medication patches to avoid harm to others.

When your pain medication patch is due to be changed, remove it from the skin and fold it, pressing the sticky sides together. Immediately dispose of the patch by placing it in:

• a large empty medicine bottle with a child-proof lid
• a small lockbox (e.g. fishing tackle or tool box)
• a medical waste bin called a ‘sharps container’ provided in some parts of Canada by pharmacies and hospitals

Label the container and place it in a safe place that is out of reach of children and pets. Return used patches to the pharmacy or hospital as soon as you are able.

In the past, health care professionals recommended flushing used pain patches down the toilet. Due to growing concerns about medicines in our waste and water systems, this is now discouraged particularly if you have a septic tank or field. Flushing pain patches down the toilet should only be done in situations where reuse, misuse, theft or abuse of the medication in patches is a concern, and it is clearly not possible to return used patches to the pharmacy or hospital within a safe period of time.

If the patches are no longer needed because the person has died or is no longer cared for at home, or if the person’s pain medications have been changed, return the patches to the local pharmacy or hospital as soon as possible.

Do not hesitate to ask your local pharmacist or health care team for advice on how to best dispose of your pain medication patches where you live.

Someone with lung cancer may have symptoms specifically related to a tumor in the lungs and may have symptoms caused by the general effects of cancer on the body.

When people have a tumor in the lungs, they often cough or are short of breath. Some people experience these throughout the illness. For others these may only become a problem as the disease advances. There may not be any pain associated with lung cancer. The presence of pain depends on whether the tumor is causing any pressure or damage in the lungs. These symptoms usually can be controlled so that people are comfortable.

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

Assessing and responding to the spiritual needs of patients and families are important aspects of person-centred, comprehensive palliative care. However, hospice palliative care programs and settings vary widely in their spiritual care resources. Ideally, every palliative care team should include a certified spiritual care provider (i.e., chaplain) to attend to spiritual needs and concerns. While spiritual care providers are specialists, primary spiritual care falls within the purview of palliative care professionals in accordance with their training and comfort level.[1] The report on the 2009 Consensus Conference on Spiritual Care in Palliative Care refers to this as an “interprofessional spiritual care model.”[2]

The key capacity that palliative care team members need for attending to patient spirituality is the ability to identify:

• spiritual concerns or distress; and
• spiritual resources for coping with illness.
  

This capacity can be easily developed by any team member who recognizes the importance of spirituality. By asking a few simple questions about the patient’s spirituality, a team member can determine whether the patient needs the team’s assistance in meeting his or her spiritual needs. The spiritual assessment tool, FICA (© 1999 Christina Puchalski), provides clinicians with an efficient and useful way of taking a spiritual history[3]:

F—Faith, belief, meaning

• “Do you consider yourself to be spiritual or religious?”
• “Do you have spiritual beliefs that help you cope with stress?”
• “What gives your life meaning?”

I—Importance and influence

• “What importance does your faith or belief have in your life?”
  
• “On a scale of 0 (not important) to 5 (very important), how would you rate the importance of faith/belief in your life?”
  
• “Have your beliefs influenced how you take care of yourself in this illness?”
  
• “What role do your beliefs play in regaining your health care decision making?”
  

C—Community

• “Are you part of a spiritual or religious community?”
  
• “Is this of support to you and how?”
  
• “Is there a group of people you really love or are important to you?”
  

A—Address/action in care

• “How would you like your health care provider to use this information about your spirituality as he or she cares for you?”

Depending on the patient’s response, you might ask additional questions, such as the following:

• “How well is your faith (or spirituality) working for you at this time?”
  
• “What spiritual (or religious) practices give you inner strength during your illness?” “Do you need any help with these?”
  
• “What spiritual (or faith) community supports you?” “Are you in contact with them?” “Do you need help to connect with them?”
  

Ask questions like these in a respectful and sensitive way because they probe areas that may be at the core of the patient’s identity. When patients share what is important to them spiritually during their illness, they provide the information you need to include spiritual care in your plan. If a patient expresses spiritual distress or has specific spiritual needs, teams without a designated spiritual care provider may need to refer the patient to a community spiritual leader, spiritual care volunteer, spiritual director, pastoral counsellor or parish nurse. Such referrals should be made only with the patient’s consent.

Spiritual distress is not limited to patients who consider themselves religious. Even if a patient has indicated that religion or spirituality are unimportant, team members should be alert for signs of spiritual distress. Expressions of any of the following are common signs of spiritual distress:

• meaninglessness;
• despair/hopelessness;
• alienation/estrangement;
• abandonment/isolation;
• guilt/shame; and
• anger.
  

When a patient strongly expresses any of these feelings, team members should ask about their root and inquire whether the patient needs assistance in working through them.

Including community spiritual leaders as part of the larger palliative care team is especially important for teams without regular chaplain services. This requires becoming acquainted with your community’s spiritual leaders and what they have to offer. According to the consensus report, “when building relationships with community religious leaders or spiritual care providers, it is important for the interprofessional teams to determine what training the person has, since this can vary widely.”[2]

The health care team needs to be confident that patients and families referred to community spiritual leaders will receive respectful, compassionate and competent spiritual care. The team can work with community spiritual leaders who are able to provide appropriate spiritual care to develop methods for making referrals. Discussions with these leaders about the use of pain medicines and life-sustaining treatments within the palliative care program could help to develop common understandings and supportive relationships. The palliative care team could also work with community spiritual leaders to develop a training program for spiritual care volunteers in the palliative care program.

Knowledge of spiritual issues related to illness and bereavement is regarded as fundamental to end-of-life care according to Canadian Hospice Palliative Care Association (CHPCA)’s A Model to Guide Hospice Palliative Care.[4] Trained and certified spiritual care providers (chaplains) can play an important role in helping palliative care teams develop their spiritual care capacity. While there is much that a palliative care team can do to meet the spiritual needs of patients without the leadership of a chaplain, adding a chaplain to the team should be an important goal. How to reach this goal will depend on the setting. It may require strategic planning at the team, organizational, regional or provincial level, or at a combination of these. Perhaps you have a role in helping this happen by continuing to highlight the spiritual needs of your patients and working to find ways of responding to them effectively.

References

1. Sinclair S, Chochinov, HM. Communicating with patients about existential and spiritual issues: SACR-D work. Prog Palliat Care. 2012; 20(2):72-78.

2. Puchalski C, Ferrel B, Virani R, et al. D. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med. 2009;12(10):885-904.

3. Puchalski CM, Romer AL. Taking a spiritual history allows clinicians to understand patients more fully. J Palliat Med 2000;3:129-137.

4. Ferris FD., Balfour HM, Bowen K et al. A Model to Guide Hospice Palliative Care. Ottawa, ON: Canadian Hospice Palliative Care Association; 2002.

Starting discussions about death with children can be very difficult, especially when children are quite young. This young mother is likely experiencing immense angst because of her disease and in addition to her own emotions, must also tell her children she is dying.

The best way to help this young mother is to guide her through initial and subsequent discussions with her children by focusing on some key considerations. Suggest that she set the stage for her discussions by limiting distractions. She might also choose a time of day when her children are more alert and attentive.

Suggest that she think about how she will describe her illness to her children in view of their ages. She should use the name of illness, state that she is very sick and briefly describe what is happening to her body. Likely the illness is not contagious, so she needs to assure her children that they will not get sick. She also needs to let them know that they did not cause the illness and that no one can do anything to make her feel better, not even her doctors.

Explanations should be brief, concrete, specific and simple. She should say that she will become sicker, will have less energy and will die from her disease. Using the words “death” and “dying” is important. Doing so will help her children understand that it is all right to use these words to describe what is happening.

Sometimes adults find having a support person with them helpful when talking with their children. This may provide emotional support or assistance in explaining the illness to the children. This mother may need someone who can help answer the children’s questions and who can take over if she finds the discussion too difficult. Encourage her to choose the right person: someone intuitive and well known to the children. She should discuss that she wants to approach the conversation openly and honestly, and that she will signal her support person if she needs help.

Emphasize the importance of informing her friends and family about her approach. Many people avoid talking about illness and death, especially around the person who is dying. If this mother starts the conversation and asks her friends and family to also be open and honest about her situation, this will likely make the experience much easier for her children. It also acknowledges that others will be involved in conversations with the children as time goes by.

This mother will need to consider the developmental level of her children when discussing her illness and death. Three- to six-year-olds have a limited understanding of body functions and the permanency of death. Children at that age also tend to be magical thinkers, have intense imaginations and may believe that their thoughts or actions have caused the illness. Young children are able to absorb and recognize the emotions of those around them, and probably have a sense that their world is changing.

These children are at very different stages in their comprehension, development and ability to concentrate. Three-year-old children are still developing language skills and may need her to explain some words. Three year olds have a very limited attention span, compared with a five year old. This mother likely can anticipate how her children react to news or stressors, and whether she should talk with them together, or spend time with each of them individually.

Three-to-six-year old children will process conversations over time, establishing their own pace for receiving and thinking about information. They will likely ask questions repeatedly and frequently as they try to make sense of a situation they may not understand. They will likely process what is happening through play and art. It would not be unusual for children of this age to speak about their mother dying while playing with other children.

If her children are in school or daycare, alerting the teachers and staff about the illness is also important. This will allow the school to report or address any issues or changes in behaviour that may arise. It will also help teachers and staff be more aware of her children’s interactions and observe how they are coping as her illness progresses.

As she becomes more ill, encourage her to have the children around her so they can be a part of the experience as much as possible. Emphasize that she needs to prepare them for the inevitable changes in her condition and ensure that someone can explain what is happening to her if she is unable to communicate. The children will likely adapt well if they are kept informed and are a part of the process as their mother dies.

Reference

Himelstein BP, Hilden JM, Morstadt Boldt A, Weissman D. Pediatric palliative care. NEJM. 2004;350:1752-1762.

Congestive heart failure (CHF) means the heart is failing to pump blood properly and can’t meet the requirements of the body. Different heart diseases or disorders can cause this condition.

The degree of heart failure is often described using a system developed by the New York Heart Association. It has four classes, which define the degree of failure according to its effect on a person’s life. The higher the class number the worse the CHF, and the underlying heart disease. As someone’s disease worsens he or she will progress through these classes:

• Class 1 – No limitation in physical activity. Ordinary physical activity produces no symptoms.
• Class 2 – Slight limitation in physical activity. No symptoms at rest. Symptoms possible with ordinary physical activity.
• Class 3 – More severe limitations in physical activity. Usually comfortable at rest. Symptoms with unusual physical activity.
• Class 4 – Inability to carry on any physical activity without producing symptoms. Symptoms possible at rest.

It’s hard to predict how CHF will progress. It depends on the underlying disease. Some cardiac diseases produce more symptoms and more rapid decline than others. The following symptoms, however, are a good indicator of severity of the condition and often become worse as the disease progresses:

• fatigue;
• dyspnea – shortness of breath;
• edema – swelling in the limbs and other places in the body;
• increased heart rate;
• nighttime urination;
• chest pain;
• skin changes – cool and sometimes greyish skin.

Several tests are available to determine the degree of heart damage, and assess a person’s physical condition and capacities. Medications and other therapies can control symptoms. When the symptoms become severe, they can be treated in hospital. As someone’s CHF becomes worse, the person usually is admitted to hospital more often and for longer periods at a time.

Every family has their way of addressing stressful situations and how information is communicated. This family functioning will now change, with the death of their mother and wife Your health care team will need to keep in mind that each family and family member will deal with illness and grief in their own unique way. Being sensitive to these changes and the challenges of determining how the family will function without one of the parents is the first step in trying to help this whole family cope with their grief and loss.

It is also important to consider the specific ages of these children and their developmental level, which will impact their understanding about death and grief. Children from ages 0-2 years will have a limited understanding of the world around them, have limited language skills and also experience the world in a very physical way. They will sense that something is different in terms of their schedule, routine and the emotions of those around them. As the adults surrounding them are grieving, they will require their routine and simple explanations about what is happening around them. If it is possible to have familiar caregivers and family to assist in caregiving, this will provide the comfort and consistency.

Children who are about 3-6 years of age have a limited understanding of the finality and permanence of death. They continue to have an incomplete understanding of how the body functions and the concept of illness. At this age, children require simple explanations about what is happening and the opportunity to ask questions. They may have misconceptions about what has occurred and therefore it is important to be direct and willing to answer the questions they have. Explaining the expected emotions of those around them helps them to understand that grief involves sadness and continues to happen over a period of time. At this age children process grief while they continue to take part in childhood activities, such as play.

Children from 6-10 years of age are beginning to understand the concept of illness, death and grief and also the permanence of death. They are becoming aware how illness impacts the body. However, their imaginations can be quite active and therefore their understanding of what is occurring may not be grounded in reality. The new emotions and feelings that they experience can be overwhelming and frightening. Maintaining open communication and being available to clarify any questions is important. At this age kids are curious about the physical changes and how a body is cared for after death. Children may also have questions about the spiritual aspect of death and grief.

As the children in this family grieve, it is vital to provide an avenue where they feel safe to ask questions and express their emotions. This may be with their father, at school, or with a family member or friend. The father will set the tone about how open he is to discussing how he is grieving and how his children are doing. He may need guidance about resources to support them as a family. This could include books, a grief support group to attend as a family, or perhaps counseling services. It would be helpful to explore the various options and link this family to local resources that are available to them.

It is important for this father to remember that he is going to be dealing with his own grief, and well as helping each of his children with their grief. This can be emotionally exhausting in and of itself. However, there are many physical adjustments to daily life that will also be occurring. This father may need assistance in his home as he adjusts to working and caring for his children on his own. If family is not available to assist him, he may need to consider hiring help to assist him in caring for his children. Your health care team could recognize if assistance is required and provide information on how this type of assistance can be accessed.

If these children attend school or daycare, it would be important to notify the staff about the death of their mother and how the children are coping. Teachers might notice changes in behavior and the academic performance of these children, which would be an expected part of the grief experience. Resources to assist with their grief may also be available through the school system.

Children often worry about forgetting things about someone they love that has died. You may want to encourage this father to write down memories of his wife for his children. Another part of remembering her would be to continue traditions as a family or incorporate specific memories into their everyday life. In this way, his children will also feel comfortable talking about their mother, which will ultimately help them as they grieve.

References

Himelstein, B.P., Hilden, J.M., Morstadt Boldt, A., Weissman, D. Pediatric palliative care. NEJM. 2004; 350:1752-62.

Torbic, H. But what about the children? A guide for home care and hospice clinicians. Home Healthcare Nurse. 2011; 29(2):67-77.

It is difficult to know how to respond to a child when he or she says, “I don’t want to die.”  Children often understand much more than we give them credit for.

Children often say things to or ask questions of the people they trust and know will be honest with them. This child feels comfortable broaching this subject with you and has opened the door for a conversation to occur. A response to this type of question might be: “It isn't fair that you are a little kid and have to die. Would it be okay if we talked about it?” This may lead to further discussion where open-ended questions are often helpful to determine the child’s specific issues.

Often, children have fears or worries about what will happen and what symptoms they might experience. This would especially be a concern if they have had severe symptoms as part of their disease process. Other children fear that if they die, no one will remember them. They worry that life will go on without them, and that they will not be thought of very often. Depending on the age of this child, he or she may also have some ideas about illness, death and dying that are not realistic and may have imagined things that have scared him or her. If the conversation allows, you may want to say, “People who are really sick often have things they are scared of or worry about. Is there anything that you are worrying about or are scared of?” This normalizes the common emotions of those who are dying and also provides an opportunity for the child to discuss his or her worries.

If you are feeling that this is a difficult conversation to have on your own, other health care providers may be able to help you and possibly be there with you when you have a discussion with this child. It would be important to get permission from the child before involving others in these delicate and personal discussions. If you are asking someone to be a support for you, we recommend that it be a health care provider known to the child, and someone the child trusts and feels comfortable with. It may also be helpful to consider involving palliative care.

If you are not feeling comfortable having this type of conversation, you could also offer to link this child with additional resources that can address the emotional aspect of dying that the child is experiencing. These resources may include a child life specialist, social worker, psychologist or art therapist.

Some children may find that they want to express their emotions and hopes through art. They may find Marge Eaton Heegard ’s workbook, Beyond the Rainbow: A Workbook for Children in the Advances Stages of a Very Serious Illness, very helpful.

It will also be important to ensure this child and his or her family has access to resources that may be required to support the family emotionally and physically with care giving.

See also: Talking with Children and Youth about Serious Illness

For the child:
Beyond the Rainbow: A Workbook for Children in the Advanced Stages of a Very Serious Illness by Marge Eaton Heegard

For the parents:
Three-page, free, downloadable handouts from Child Bereavement UK :
A guide for parents of terminally ill children

When a sibling is not expected to live: supporting children

It may help to start by asking your husband what his fears are. It’s important to understand them and talk about them. Some fears are about what will happen physically. These fears may be eased if he understands what’s ahead, and what the health care team can do for him in his final days. Other fears may be more spiritual or emotional, as he struggles with the unknown and how to respond to the changes that are happening.

It may valuable for both of you to meet with someone from a hospice or palliative care program, or to meet with his physician or another health care provider. You can learn what services are available, and it may help your husband talk about his fears and get answers to questions. Sometimes meeting with a member of the health care team such as a social worker or spiritual care provider can help in talking about existential fears and concerns.

People who are dying can be afraid of pain or other symptoms. Let your husband know that the health care team can address the symptoms, and will do all it can to control them. He may be afraid of specific symptoms. If that’s so, you need to work with the health care team to develop a plan to address them. If certain symptoms are expected, the plan can include things such as having medications available for possible emergencies. If your husband knows his symptoms will be addressed, this may help ease some of his fears.

People who are dying may have other fears. It’s important to talk about them, to understand what they are and what a patient needs to know. Ask your husband how much information he wants about what commonly happens to people who are dying. He may want to know everything, or nothing, or only what’s important to him. Knowing this helps you know how best to help him.

Suggested Reading

Dying Well: Peace and Possibilities at the End of Life
by Ira Byock, M.D.

Handbook for Mortals: Guidance for People facing Serious Illness
by Joanne Lynn and Joan Harrold

When a cancer has spread to a bone, it causes the structure of the bone to break down or to become abnormal. This also can cause swelling in the area. During these processes, the body sends a signal to the brain that there’s something wrong with that part of the body, which produces the sensation of pain. The pain of a bone metastasis is usually described as a dull, aching pain that makes the area tender and sensitive to pressure. The pain may be worse with movement. It’s usually felt in the area where the metastasis is located. Bone pain also can be referred, which means the pain can be felt in another place, but this isn’t common.

Because of the damaged bone structure, a person with bone metastasis is prone to bone breaks. These fractures can range from very small to large and also can cause pain.

There are unique issues when the metastasis is in the bones of the spine. The bony portions of the spine protect the spinal cord. If these are damaged, or if there’s swelling around the damaged bone, there can be pressure on the spinal cord. This pressure can cause pain to the nerves in the spinal cord. The nerve pain, called neuropathic pain, is described as burning, with sudden, sharp, knife-like sensations. It may feel numb or tingling, like the sensation of hitting a funnybone. Neuropathic pain is very different from bone pain, but it also can be a result of bone metastasis.

It can be very difficult to predict the course of chronic illnesses such as chronic obstructive pulmonary disease (COPD) or congestive heart failure (CHF). Chronic illnesses place energy demands on the body that slowly deplete a person's energy reserve. In the later stages of illness, energy reserve is low, and seemingly small problems like a cold or infection can overwhelm a person's ability to fight it and a person's overall health and functioning change dramatically. This is often why a person's health seems to change suddenly.
 

Generally as the illness progresses, these sudden "flares" tend to happen more frequently. Interventions (such as using antibiotics to treat a suspected infection, or treating other problems suspected to be contributing to the situation) may help to improve the symptoms, and the person’s overall health and function. However, there is also the possibility that the person simply lacks the reserve energy to successfully overcome the illness, which leads to changes that signify the final days of life.
 

Because the path of chronic illness can be so unpredictable, it can be difficult to recognize the final phase of illness. This is partly because each flare-up tends to look much like the previous ones from which the person pulled through. The only clues that a flare-up is more serious may be a slower improvement with aggressive treatment, or tests that indicate other organs are weaker.
 

This uncertainty can be a concern for people and their families, and it can make decisions about investigations and treatment very difficult. Often in deciding how best to manage these symptoms, families and health care providers consider several things:
 

• The path of the illness to date
  Reviewing the big picture of what has happened in the past months can give an overall sense of how things are going. It can also help to clarify what kind of treatment a person might want in the future. For example, a person who has been hospitalized in the past may choose not to go to the hospital for future episodes. If this is the case, the team can then help to plan for other types of treatments (for example, medications) to treat worsening symptoms at home when they occur again.
  
   
• What is thought to be causing or contributing to the current situation? What are the potential benefits and burdens of further investigation and treatment?
  In situations where it is unclear if treatment will lead to improvement, a time-limited trial of treatment may be considered (for example, treating an infection with antibiotics for a given period). As part of such a trial, families and health providers usually talk about their hopes for the treatment and when benefits from treatment might be expected. For example, if symptoms do not improve within one week, this treatment has not been helpful and will be stopped.
   

Regardless of what treatment path is ultimately chosen, it is important to have the opportunity to discuss your options with a health care provider. Talking about what may be expected as the illness progresses, and having a plan, can help reduce feelings of uncertainty and anxiety. Planning for future symptoms can also help to ensure that the person is comfortable – regardless of whether the cause of the symptoms can be fixed.
 

It is common for a person to feel a range of emotions when they hear their illness is progressing and death is not far away. The person may feel numb, sad, helpless, disappointed or angry, to name just a few possible reactions. You and other family members may have similar feelings. All of these reactions are normal. There really are no specific words that will take away the stress of the situation, but there is much that you can do to bring some comfort to your wife.

When you see your wife crying and obviously distressed or overwhelmed by her situation, you may feel quite helpless. This may be one of the toughest parts of loving a person who is dying. It is important to understand that there is really nothing that you can say or do to fix the situation and automatically stop the tears. When your wife cries, this is the time to show your love and support. Hug her, hold her and let her know that you are there for her.

Crying and feelings of sadness are a very normal response in the face of an advancing life-limiting illness, but if you feel her sadness is becoming severe, seek help from your wife’s health care team. With all the changes your wife will experience, she may become depressed. Talk to her health care team if she has trouble eating or sleeping, or loses interest in daily activities or the things that used to bring her pleasure. Her team can manage such symptoms of depression. Also ask your wife or her team if she has any symptoms that affect her comfort. Uncontrolled symptoms such as pain or shortness of breath can be so overwhelming that they can change a person's emotional and spiritual state. Addressing physical symptoms does not make everything better, but it may allow your wife to focus on emotional and spiritual struggles. Articles in this section describe common symptoms, including depression, that may arise as illness progresses:
Symptoms

The most important thing you can do is to be attentive to your wife and let her know you are there to support her. Listen to your wife as she expresses her thoughts and feelings; listening is an excellent way to show you are available to her. It is also helpful to say out loud that you are there to support her. Sometimes people don't say this clearly because they believe their support and intentions are obvious or understood. However, it is important to put your feelings into words. You could say something like this to reassure and comfort your wife: "I love and care about you, and do not like to see you going through this difficult situation. Please know that you are not alone and I am here for you whenever you need me.” Such words are reassuring, and leave the conversation open to discussion emotional and spiritual struggles.

You could ask your wife if she has particular things that she wants to talk about, or if there are things that she does not want to talk about. You might ask what she is thinking about and talk with her about her fears. While there are no special words to make a person feel better, there are some words that are unhelpful. An example is something like this: "I know what you are going through." No doubt this is said with the best intentions, but it implies that you have been through the other person's experience and have felt the same things. This can be interpreted as minimizing that person's experience and feelings, and may lead the person to think there is no point in talking about them. Instead, you might say something along the lines of "I do not know how it feels to be in your situation, but I am here to support you." This article offers some tips on listening to and talking with someone facing death:
What Do I Say?

A spiritual perspective may help you and your wife find direction and perhaps even hope, as you deal with the challenges of your situation. It requires making room in the stories you tell about your lives to include the changes your wife’s illness has brought, and requires asking yourselves how you can live meaningfully with the changes. You will need to explore new ways of loving each other and seek a fresh awareness of your spiritual depths and resources. This is difficult work, and it can make you feel vulnerable or anxious at times. However, it can lead to a new and important chapter in your lives individually and as a couple. If you have a religious background, you may want to discuss whether it offers beliefs or practices that could help you now. However, some people find it difficult to embrace one particular religion at a time such as this.

You might ask your wife if she has any specific goals or tasks she wants accomplished, and how you might help her achieve them. She may want to resolve a long-standing conflict or settle some other unfinished business in order to feel peaceful. She may also have some thoughts about how she might leave a legacy. Are there important stories she wants to pass along? Does she want to share a family story or lessons she has learned with children or grandchildren? Research has found that people benefit from feeling they have passed along something significant to their loved ones. Although you might feel uncomfortable starting such a conversation, you could be pleasantly surprised by what you learn. If you have already had these sorts of conversations, you may just want to reminisce and review your life together. This can include stories about both the good times and times that were not as good.

You or your wife may find insight or comfort in one of these articles on the emotional and spiritual aspects of life-limiting illness:

• Living with Limited Time: Exploring Feelings
• Stress and Distress
• Spirituality and Life-Threatening Illness
• Finding Meaning and Purpose During a Health Crisis

This article has information you may find helpful as death approaches:
When Death Is Near

It’s common that people with progressive illnesses want to avoid certain facts. It’s especially common if they’re not responding to treatment or if their health is declining. In your grandmother’s case she may be ignoring her situation because she can’t cope, or she may be saying what she thinks her health care providers want to hear.

It can be difficult and frustrating to support a loved one who isn’t facing reality. It’s common to feel helpless; you don’t want to take away hope, but you do want to deal with the issues that come up when someone is terminally ill. It’s best to be upfront with your grandmother. This is a good approach generally, but in this case there are additional reasons.

A physician has an obligation to be open with a patient about all aspects of care. It’s essential to establishing trust between the physician and patient, which is the basis for care. Physicians feel uncomfortable having conversations with family or friends behind a patient’s back. The physician is in an awkward spot if there’s new information from a source that can’t be revealed. If your grandmother senses this has happened, it could erode the trust she needs to have in her physician. Of course, if she faces a physical risk somehow, then this needs to be considered.

Trust is important also between a person who’s ill and family and friends. A person with a terminal illness is vulnerable and needs to feel safe. Like others who are ill, your grandmother needs independence, dignity, and a role in the family as much as possible. If your grandmother senses that people are talking to her physician without telling her, it can diminish her dignity, her respect for others, and decrease her sense of control over her own life. Such conversations are meant to be confidential, but one way or another they usually end up getting back to the person who’s ill. Lost trust is not easily regained.

You may be worried that by not being upfront with her physician your grandmother is missing out on important treatment options. Be assured that if your grandmother has significant health issues they will be evident anyway. Such issues are hard to hide or ignore. Her physician likely will be aware of them, and aware also of the common desire to put up a good front. Your grandmother’s physician may not want to address this explicitly, and may be trying to find a way to gently let your grandmother know that her health is deteriorating in the midst of few treatment options.

It’s important to be open with your grandmother. Tell her you’re concerned that she’s not telling her physician what’s really happening. Consider asking her permission to come along when she visits her physician, so that you can ask questions. Alternatively, you can ask permission to phone the physician yourself. The physician would then check back with your grandmother.

Your grandmother has to approach her situation in her own way, and that may change with time. Still, it can be hard on you and others around her. Consider telling her how you’re feeling. If you’re open, it may help her open up also.

Sennosides is a mixture of two naturally occurring plant glycosides (sennosides A and B). It works in the large intestine, acting directly on the submucosal plexus and the deeper myenteric plexus to stimulate propulsive waves. The typical onset of action for sennosides is 6―12 hours. Ideally, it should be taken at bedtime, with an expectation of results after breakfast the following morning.

Reference

Twycross R, Wilcock A, Dean M. Canadian Palliative Care Formulary. 1st Canadian ed. Nottingham, UK: Palliativedrugs.com; 2010.

Death and dying often elicit a heightened awareness of the importance of spirituality in patients, families and health care professionals. Caring for dying people and their families may offer opportunities to help them find meaning, love, hope and peace in the midst of very difficult circumstances. With these opportunities comes the responsibility of respecting patients’ right to embrace their own values and traditions and to protect them from those who might take advantage of their vulnerable situation.

Your colleague certainly seems to recognize that dying people and their families may have religious questions or spiritual struggles and seems ready to share her own answers. As you suggest, though, it’s not clear whether in doing so she is meeting her own needs or those of her patients. The SACR-D model outlines the five key elements that health care professionals should consider when addressing spiritual issues[1]:

• S-self-awareness: the need for self-awareness and spiritual sensitivity on the part of the spiritual care professional;
• A-assessment of the patient’s spirituality: standardized tools and clinical skills to help health care professionals assess patient spirituality;
• C-compassionate presence: the effect of clinicians’ presence in the provision of spiritual care;
• R-referral for additional support: recognition of the availability and need for additional supportive and specialized resources;
• D-dialogue: discussion of spiritual issues by communicating with patients in a language that is based on their spiritual perspective.
  

You can address how staff share their faith with patients at both a personal and team level. At a personal level, you could engage your colleague in conversation about what her religious faith means to her. Begin by simply acknowledging that her faith is important to her before offering your observation that she often speaks of her religious faith to the patients she cares for. You might then express curiosity about the importance of her faith in her own life. If the opportunity presents itself, it might be helpful to clarify with her where her sense of duty to share her religious faith with patients comes from—does she see it as her duty as a health care professional or is it a personal conviction? Your conversation could include questions like these[2]:

• How did you come to have your religious faith and how has it affected your life?
• What meaning and purpose does your faith give you?
• What beliefs and values are important in your personal faith?
• In what ways does your faith help you to feel part of something bigger than yourself?
• How does your faith influence your relationship with God (or a higher power)? With other people? With the world?
• How does your faith affect your goals or direction in life?
  

If you are able to find an appropriate time and space for such a conversation, your role is simply to listen and to seek understanding without judging your colleague’s religious orientation and the story of her spirituality. By doing this, you model a respectful way of entering into conversations with patients and their families. If she is open to it, you might, at times, offer your own perspectives. Do this without suggesting that your way of looking at things is right or better. Sharing your views is a way of revealing something of yourself, which may enrich the relationship. It also models how to share faith perspectives in a respectful, supportive way. Conversations about faith with patients should not be off limits for professional caregivers. However, caregivers should conduct these discussions in a spirit of openness, acceptance, respect and mutual sharing.

Responding to the spiritual needs of patients should be addressed at a team and/or organizational level. A spiritual care provider may be able to provide further guidance on how to best broach this conversation with your colleagues. A spiritual care provider may also be able to offer an in-service session on appropriate and effective spiritual care interventions that would help team members develop spiritual care capacity. The report on the 2009 Consensus Conference on Spiritual Care in Palliative Care includes recommendations for educational programs to help team members develop spiritual care capacity. Of special importance, is the recommendation that all team members should have training in compassionate presence and active listening[2].

The 2009 report also notes a number of ethical considerations that must remain central for staff who attend to the spiritual needs of patients[2]:

• Because those who are dying often perceive professionals to have all the power and control, professionals “must never exploit a patient’s weakness or vulnerability” and “must exercise care, restraint, and confidentiality” in relation to their spirituality.
• Boundaries that recognize physical, social, emotional and spiritual limits for the health care professional and patient need to be maintained.
• Proselytizing within the clinical relationship is a “violation of the trust the patient has given to the health care professional.”
  

The goal in all encounters about spirituality is to “open a dialogue that can be tailored to the specific needs of the individual patient.”[2]

References

1. Martsolf D. Cultural aspects of spirituality in cancer care. Semin Oncol Nurs. 1997;13(4):231-236.

2. Puchalski C, Ferrel B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med. 2009;12(10):885-904.

Other reference

Sinclair S, Chochinov HM. Communicating with patients about existential and spiritual issues: SACR-D work. Prog Palliat Care. 2012;20(2):72-78.

Docusate is a surface-wetting agent, more commonly known as a stool softener. If prescribed, it should always be combined with a stimulant like Senokot. Current published literature indicates that patients usually respond as well to sennosides alone as they do when sennosides are combined with docusate.

One of the few times when docusate may be used alone is when the patient has a partial bowel obstruction. The onset of action for docusate is 12―72 hours.

You should note, however, that docusate should never be used in combination with mineral oil.

Reference

Twycross R, Wilcock A, Dean M. Canadian Palliative Care Formulary, 1st Canadian ed. Nottingham, UK: Palliativedrugs.com; 2010.

Our concern and love for our family members does not end with their deaths. Unless we had unresolved issues with them, we want them to be happy and content. We may feel especially concerned about family members who had difficult lives or a hard time in dying. We hope that in death they will have the peace and happiness they could not find in life.

Thoughts about what happens to our family members after death may bring up questions about the universe we live in. Is our universe friendly or not? Does human life have purpose and meaning? If we are religious, we may wonder whether God is loving or punishing, or what is God’s purpose for our lives.

Our answers to such questions affect how we feel about what follows death. Some people find comfort in religious answers about the afterlife; many religions provide pictures or maps of life after death, and often describe rewards and punishments for the way people lived on earth. Other people may feel abandoned by God, or feel religions do not provide the answers or comfort they are seeking during this challenging time.

Some people believe that mortality helps to make life meaningful – that if we lived forever we would not recognize what a gift life is, or feel an urgency to find a way to live meaningfully. Some say that death does not destroy the meaning in life – that what someone creates in living and dying continues to influence the world after they are gone. However, other people’s ideas about how death relates to the meaning and purpose of life will not necessarily satisfy us. Each of us must explore for ourselves questions about the meaning of life and death.

If we believe that the universe is friendly or that God cares about us, we may trust that even in death our family members will be cared for well, or will remain part of nature's web of life. If we believe that life has meaning, we may be able to accept their death as part of life; that is, if we sense that there was a purpose in their lives, we hope that the meaning of their lives is not wiped out by death. If we feel disconnected from the universe’s web of life, or experience God as demanding, harsh, or distant, we may have more difficulty facing death with trust, acceptance, and hope.

Perhaps you can discuss death and the meaning of life with a trusted friend. Such a conversation may be difficult to begin, but it may give you new ways of looking at things. If you have found comfort or strength in a religious tradition, you may want to talk with a religious leader from your faith community about your questions and anxiety. Another option is to talk to a professional counsellor, social worker or hospice volunteer.

You could create a private ritual that honours your connections with family members who have died. Such a ritual is effective if it contains these elements:

• Remember and give thanks for the person who died.
  If you are able to involve family members, you can share favourite memories of the person. Pictures or mementos can help you connect with the spirit of the person. Whether your reminiscence brings laughter or tears, love or anger, it becomes another step in your grieving process. If no one is available to share with you, set aside a special time to remember and give thanks alone.
• Release the person into the care of God or to the wider expanses of the universe.
  You could do this by offering a prayer for the person. An alternative is to write out your wishes and hopes for the person in death, and place them somewhere that has special meaning for you or the person.

You can find additional suggestions for helpful rituals, in this article:
Rituals to Comfort Families, especially the section "Rituals after a death in the home".

You may also find helpful guidance in this book by Deepak Chopra:
Life after Death: The Burden of Proof