Asked & Answered

Many professionals struggle with initiating conversations about end-of-life care. Some common barriers include finding the right moment, choosing words that will open the door, and being informative and empowering but not threatening to the person’s sense of hope.

In our experience, people who are living with the diagnosis of a terminal condition have had thoughts about dying, even if these are brief, fleeting fears they quickly suppress. It is difficult to imagine being in such a position and not having concerns about the end of life.

A helpful way to initiate a conversation about end of life is to begin with a statement that normalizes these concerns, such as:

"Many people who are in situations such as yours have thoughts or questions about what to expect as their illness progresses, such as how they might feel or what can be done for them. Are these things you have thought about? Would you like to talk about them?"

Alternatively, you could start by saying:

"When people are in situations like yours, even when they are hoping that what’s being done will be helpful, and may turn things around, they often have times when their mind turns to scary ‘what-if?’ thoughts. Is this something you’ve thought about? Would you like to talk about it?"

Normalizing the experience can lessen a patient’s feeling that he or she is the only person who has such concerns. However, it is important to seek the patient’s permission to expand the discussion, even if he or she says, "Yes, I’ve thought about that." Sometimes people will acknowledge having thoughts about the end of life, but will decline to explore them further.

Another approach to initiating the conversation is by framing it as an aspect of the patient’s care plan that should be discussed. Start with positive information, such as what is being done for the patient and what further options are available; then address the "what if" issues. For example, with a cancer patient, you might say:

"As you know, we are using a new chemotherapy protocol, and we are hopeful that we’ll see some improvement for you. There may be other options we can think about if needed. However, I’d like to talk with you about how you would like us to help you and work with you if things don’t improve as we had hoped. Often people have thought about what kind of approach to care they would want if their illness progresses, in spite of treatments, and it seems they are losing ground. Would you like to talk about that?”

We have found the approaches described above are usually an effective starting point. Nonetheless, there are people who simply will not talk about end-of-life issues, which can be frustrating for the health care team and upsetting for the family. In our experience, this reluctance to talk about dying doesn’t mean they don’t understand that they’re dying, they just don’t want to talk about it. It would be unusual that someone with advanced disease, who is relentlessly losing weight, becoming weaker, and experiencing pain and other symptoms, would not know that he or she is dying. In these cases, it is usually not necessary for us to keep trying to make them understand and verbalize their acknowledgement. Rather, we should try to deliver the best care we can within the constraints that the patient and family define. It is important to try to understand what is behind the reluctance. It could be that the whole situation is very frightening and the patient can’t “go there;” or, by not talking or minimizing what is happening, the patient feels protected from the inevitable outcome of the illness. Either way, a more helpful approach is to work on relationship building, establishing trust and gaining an understanding of “where the person is at.” You may need to focus information sharing on family members (with the patient’s permission), so they will have a realistic picture of what to expect as the illness progresses.

You might find that Dr. Robert Buckman’s book, I Don’t Know What to Say, has valuable insights into communication challenges around death and dying. It is primarily intended for friends and family, but it is a good reference for health care providers as well.

References

Barclay JS, Blackhall LJ, Tulsky JA. Communication strategies and cultural issues in the delivery of bad news. J of Pall Med. 2007;10(4):958-977.

Clayton JM, Hancock K, Parker S, Butow PN, Walder S, Carrick S, et al. Sustaining hope when communicating with terminally ill patients and their families: A systemic review. Psycho-Oncology. 2008;17:641-659.

Evans WG, Tulsky JA, Back AL, Arnold RM. Communication at times of transitions: how to help patients cope with loss and re-define hope. The Cancer Journal. 2006;12(5):417-424.

When people are coping with the death of someone significant in their lives, it can be difficult to know whether they are experiencing grief or depression. The Canadian Psychological Association describes the difference between the two:

“Grief is often described as a longing for the person, a lack of acceptance of the death, memories that just come out of nowhere at any time or place, a preoccupation with thinking about the person, tearfulness, and sensing the presence of the person. Depression is seen as a prolonged physical lethargy and fatigue, or emotional distress for reasons other than the death.”

To decide whether your sister is grieving or is depressed, first consider her general emotional state. Typically, people who are grieving have a range of moods and feelings. They may feel extreme sadness, yet they may also experience pleasure and maintain a sense of humour. They may also feel anger, directing it inwardly or at friends and family. People who are depressed usually have low moods, and their feelings don’t vary greatly. They tend to direct their anger mostly towards themselves, and they show little evidence of pleasure or a sense of humour.

It’s also important to consider how your sister is feeling about herself. Feelings of regret or guilt are commonly associated with loss. Grieving people tend to focus on the loss, experiencing it emotionally, socially and physically. This can disrupt family dynamics, relationships, roles and responsibilities, and finances. Depressed people tend to feel excessive guilt about things they should or shouldn’t have done. If your sister is depressed, the loss may confirm feelings of worthlessness.

When grieving, people often wish to be left alone, but they will respond to offers of support and interaction. When depressed, people may either be afraid of being alone or be unresponsive to others. Keep an eye on how much time your sister spends alone and whether she sees friends and family.

The characteristics of grief and depression do overlap, and sometimes there is no hard line between them. Symptoms such as sadness, difficulty in sleeping, poor appetite and weight loss are common to both. Grief, however, tends to be trigger-related. A grieving person may feel better in certain situations, such as when friends, family and others are around to support her. But triggers, such as the deceased loved one's birthday, may cause strong feelings to resurface. Major depression, on the other hand, tends to be all-encompassing. A depressed person rarely gets any relief of her symptoms and may show a noticeable change in daily functioning. She may struggle to get up and dressed in the morning, or be unable to concentrate or participate in activities she used to enjoy.

The Canadian Psychological Association lists the following indicators to help friends and family know when grief becomes a problem:

• a lasting loss of interest in social interactions, activities and work;
• furious hostility;
• poor judgment;
• agitated depressive symptoms (overactive behaviour combined with sadness);
• continued bitter self accusation - “it’s my fault.”

Such indicators, particularly the persistence of these symptoms over time, may indicate that a person is experiencing complicated grief or clinical depression. The Mayo Clinic’s website provides good summary of complicated grief.

If you have concerns about your sister’s well-being, it’s important to involve a health care team. The team can determine whether she is clinically depressed, and help find the type of support and care she may need.

See also: Depression and Grief Work

Your father probably finds this a very difficult and stressful situation. People deal with stress in different ways, and no one approach is better than any other. As well, people’s responses can change over time. They may not want to talk right away, but may open up with time.

Your father may not be ready to open up now. Fathers often feel they have a role to maintain, and that they have to be strong when there’s trouble in a family. Your father may feel that silence is a way of showing strength and courage while your mother is dying. He may be having a hard time imagining life without your mother and be worrying about the future. He may have never faced a situation as difficult as this, and so may be struggling with how to act and what to say.

One way of inviting your father to open up is to talk to him about your own feelings. Let him know you’re willing to listen to anything he may want to say. If he sees that you’re okay with talking about your mother dying, it may tell him it’s okay for him to talk about it if he wants. This may work, or it may not. At least you’ve opened the door and let him know you’re willing to listen if he wants to talk. Your father must decide when he’s ready to go through the door.

If your father doesn’t respond to your invitation, it’s probably not productive to keep mentioning it. At this point, simply be present for him. This may be all the support he can accept right now. People tend to react to the stress of someone dying in the same way they’ve reacted to other stresses in their lives. Those who’ve responded with silence to the stresses of work, health, or finances usually respond in silence to grief and loss. Over time and with the continued presence and support of family they may slowly start to open up.

Your father may have friends or a faith community, who may be able to help him open up. They too may let him know in subtle ways that they're there for him if he feels like talking. It may be worth exploring whether your father has such a network in his life.

Sometimes sadness can worsen and become a severe depression. Watch for signs that your father isn’t eating, or sleeping, or has lost interest in things that used to bring him pleasure. If you notice these things, or you’re worried about your father's physical or mental health, let someone on his health care team know about it. Someone who is depressed may need medical help to recover from it.

Many people find it difficult to talk about death, dying and their own illness. For some people this kind of discussion is most difficult with family.

You can try several strategies to help your father open up and talk. It’s possible that no matter what you try your dad may be unwilling to talk. This can be hard for you, and if it is, it may help to tell him so. Unless he knows, he may not realize that talking will help you and him.

First, it’s important to acknowledge your father’s illness and even ask questions about it and how he’s doing. If you say nothing it can be awkward for both of you. It’s possible that you both want to say something, but each is afraid that the other is uncomfortable with the subject. Your father may want to protect you, which may be why he isn’t talking about things, or he simply may be uncomfortable. If you make the first move your dad may feel more at ease. By inviting him to talk, you are letting him know that you are open to talking about dying, or whatever else is on his mind. If your father still is silent, it may the way he needs to deal with his illness at this point. If you make it clear, however, that you’re willing to talk, it’s likely to be a comfort and may make it easier for him to open up when he’s ready.

If he does start talking, the best suggestion is to be attentive. Watch and listen for clues that tell you what your dad wants to talk about, what makes him uncomfortable and what’s comfortable. Often people who are dying are afraid of pain and other symptoms at the end of life. As your dad talks, some fears may come up. If this happens you may want to contact a health care provider who can help explain his illness and what to expect.

It’s okay to ask your dad if there are things he wants to talk about. He may have certain memories or experiences he wants to share. If you’re not sure whether your father’s comfortable with the direction of conversation, or if you’re not sure what he means by some comment, just ask. The first discussion is often the hardest. It should get easier as you and your father continue to talk.

Assessing pain in a person with Alzheimer disease can be difficult. Pain assessment is usually based on the individual’s ability to verbally report his or her pain, but many people with Alzheimer disease have difficulty communicating. Some people are able to answer “yes” or “no” when asked if they have pain, and some can point to where it hurts.

To assess your mother’s pain, make sure that you ask questions more than once and in more than one way: “Do you have pain right now?” or “Do you have discomfort right now?” or “Does it hurt right now?” These are different ways of asking the same question.

If your mother is unable to verbally communicate her pain, observe whether she shows any change in her usual behaviours. Aggression, agitation, refusal of care, yelling, hitting, grabbing, crying, facial grimacing, increased confusion, and decreased eye contact may be signs that she is having pain. Other signs include guarding her body, grinding her teeth, reacting to touch, withdrawing from contact, and drawing up her knees. Also observe if she seems to show any pain when she moves or does an activity.

When assessing pain in individuals unable to verbally communicate, it’s important to check for potential problems other than pain. Assess whether your mother has any unmet needs. Is she hungry or thirsty? Does she need to go to the bathroom? Are there any other possible causes of pain, such as infection, constipation, a wound, or undetected fractures? Does your mother have any underlying conditions, such as cancer or arthritis, that might be causing her pain?

If you think your mother is having pain, find ways to make her comfortable. Contact your health care team for their assistance. Pain treatment may include medications for pain control and other strategies to promote comfort, such as repositioning or massage. Your mother’s pain and what relieves it will need ongoing monitoring and evaluation.

You may find helpful guidance about assessing pain from Romayne Gallagher, MD, in this video: Pain and cognitive impairment: Reading the cues.

Most people worry that their final days will be filled with pain and agitation. Usually the opposite is true. In the days and hours before people die, they typically spend most of their time asleep or resting. It’s rare for pain to get worse or for distressing symptoms to appear. Most often, the various body systems just gradually and quietly shut down.

The people who are dying may worry that family members will feel lost and unable to cope. Yet, a person’s needs at the end of life are usually diminishing. Your father likely won’t eat or drink much if anything, but he won’t feel hungry or thirsty. His mouth may get dry, and you can give him some relief by wetting his mouth with a damp cloth or sponge, or with ice chips. Any pain or distress your father may feel will usually be well controlled by medications.

In your father’s final hours, his breathing will become less regular. Gradually it will slow and stop. Even without special training you will be able to recognize when the end is near, simply by the changes you observe, especially in his breathing.

You probably won’t be tempted to call 911. You’ll have spent enough time at your father’s side to recognize that what you’re seeing is a very natural progression of his illness. There may be times when it is reasonable to call emergency services. For example, something may come up suddenly that causes your father a lot of distress. You may not have the knowledge or ability to deal with his distress, and it may be that the health care team can’t respond quickly. In this case it’s appropriate to call 911 for help. Such situations aren’t common, and usually you’d try to contact your father’s health care team first.

Caring for your father at home can be a demanding experience both physically and emotionally. Your family will need to work together and help each other in order to manage. It’s also important to use the services of the health care team. They will help you with your father’s care, and they can set up home care services to give you the support you’ll need. You’ll have to be aware of your limits as caregivers, and know when to ask for help, in order to provide the best care possible for your father.

When you’re caring for someone at home you and your family need support also. This may be a very difficult time for you all, and you may need lots of answers in order to feel less worried. It’s easy to imagine that you’re the only one with such your worries, as we talk so little about death and dying in our society. Be assured though that others in your situation have very similar concerns. It’s just that people don’t always have the courage to talk about them.

Your father wants to die at home, and you want to respect his wishes. It may happen, though, that despite your best efforts, this doesn’t happen. For example, your father may have an emergency that takes him to the hospital and he doesn’t come home. If something like this happens, it’s easy to feel bad that you weren’t able to meet your dad’s wishes. Remember instead that your father was able to spend a lot of time at home, with a lot of your support.

Most palliative care programs can tell you exactly what needs to be done for expected death at home. It’s important to check with your father’s palliative care team to find out the steps you need to follow. They may advise you to make arrangements with a funeral home and the medical examiner. Often this means that your father’s physician will send a letter to the medical examiner’s office and the funeral home in advance, letting them know that a death is expected. The funeral home will be able pick up your father’s body from his home.

It’s not surprising that we have trouble finding the best way to talk and think about death when we face it in our own lives. Few of us have gone through it or seen others go through it. Some general concepts can help people and families find the approach that suits them the best.

It’s important to remember that there’s no one right or wrong way to talk and think about death. Each family has its own culture and its own ways of doing things such as communicating, celebrating, arguing and grieving. As parents, you’ve learned what works best for your family and each of your children. Those instincts and experience are your best guide.

For example, you’ll need to decide whether you gather everyone, and talk all together, or whether you talk to each child separately. One child may need hours of gentle talk, with increasingly clear discussion. Another may be more comfortable with the subject than you are. Some families have learned that having everyone in the same room for anything isn’t a good idea. This is not the time to challenge that experience.

In any approach, let your children know that it’s good to talk about dying. Any point is a good one and anything is fair game. Let them know that you won’t be upset by their talk. Avoiding the truth with optimistic but plainly false statements usually shuts down conversation, as it tells your children that the subject is something you don’t want to talk about. Honesty is the best approach. Of course, there are different ways of being honest, with various degrees of gentleness and bluntness. If your children understand what you’re saying and are coping with it, then you can be less soft and clearer in your language.

At times, the person who is dying doesn’t want to burden the family, and so won’t talk about death. Similarly, a family member may avoid discussion for fear of taking away hope or causing depression. Each may believe that if the other wanted to talk then he or she would bring up the subject. It’s usually a huge relief when someone breaks the silence and conversation flows.

You may need to talk about specific treatment options or the lack of options. If your husband has decided not to pursue a potential treatment, your children may feel that their father is rejecting the pursuit of every possible moment on this earth. This sometimes feels like a personal rejection. Consider emphasizing that accepting death is not rejecting life, and is not rejecting them.

Even adult children need to feel important and special to their father. He may want to tell each how proud he is of him or her, and how that pride helps him in this very sad time. This is a gift he can give to each child. If he’s well enough, he may consider writing a journal for each one. Every time he thinks of something to say to each one, he can write it down. This can range from a single sentence about something in the past, or words of advice for the future. Such a journal gives children a sense of legacy, and a special reminder of their dad.

Often decisions need to be made about issues such as the approach to medical treatments, or whether their father wants care at home, in a hospital or hospice. These are sad and difficult topics, but it’s important to let your children know what their father wants, and it eases the responsibility they may feel for these difficult choices. The decisions can be formalized in a health care directive. The health care team can be part of developing a directive, as they have information on the various health care options.

A directive can also allow your husband to communicate his thoughts about dignity. Dignity is a very personal concept and means something different to everyone. It helps if your husband can describe what might threaten his dignity and what might preserve it. This lets the family and the health care team understand the best way to meet his needs.

It can be difficult to find meaning or purpose in someone’s dying. Yet, this time offers a very important opportunity to your children. It helps them learn about death and dying. This may be the last lesson a parent can pass on to children. It will be important for them, and teach them how to help their own children in the future.

Telling someone about the death of a family member is difficult for most people, but it is even more challenging when the person you have to tell has dementia. Your approach will depend on the extent of the person's disease, where the person is at and how much they remember.

Often the first thought is to try to protect the person with dementia and not confuse them. Some people may avoid discussing death for this reason. However, it is important to remember that your aunt is still the person she has always been, and to respect that she can still feel the same emotions; she just may not be able to express them the way she used to. Also, not sharing the news may confuse her more and make it harder for her to cope, especially if her husband visited regularly.

There isn't one approach that works for all people with dementia, but there are a few things to consider. Several sources give these recommendations for sharing the news of death with someone who has dementia:

• Have only one person break the news, to avoid overwhelming your aunt with a group of people.
• Find a quiet, comfortable spot, and choose a time of the day when your aunt is well-rested.
• Use clear sentences like ‘your husband has died’, and avoid phrases like ‘passed away’. This improves the chances that she will understand what she is being told.

After you tell your aunt about her husband’s death, it is important to watch how she reacts:

• What does she say?
• How does her facial expression change?
• What does she do?
  

Reading these cues will help you to connect with how she is feeling at the time, as well as to know what to say if she asks about her husband in the future. For example, if you are talking about her husband, a change in her facial expression may tell you she is distressed. This in turn may tell you it is time to stop talking about his death.

Responding to her emotions will help her to feel supported and comforted. You may simply acknowledge her feelings by saying ‘this must make you feel sad’. Your conversations may shift into reminiscing about her husband and their times together, which she may find comforting.

You may find it helpful to read this article from Alzheimer Scotland, Loss and Bereavement in People with Dementia. It offers practical tips and strategies for sharing news of a death.

Also contact your local Alzheimer Society office. They may have additional suggestions and/or counselling staff to guide you in talking to and supporting your aunt.

As your father’s health deteriorates, it may get harder to maintain the hopes that he and your family had when he first became ill. You may find it impossible to feel positive when symptoms persist, when new symptoms appear, when treatments don’t bring the results you wish for, or when physical well-being declines. Indeed, at times you may feel the situation is out of control and hopeless. Mixed in with such feelings can be a deep sadness about the thought of losing your father.

It may be hard for family members to talk with one another about these struggles. You may feel pressure to stay upbeat and keep fighting the illness. You may feel you are undermining hope or showing signs of giving up if you express discouragement about what is happening, anxiety about what the future holds, question the benefits of further treatments or raise palliative care as an option.

Sometimes people are not on the same page with their feelings and concerns. Your father or some members of your family may want to talk about your father's changing condition, while others are not ready. Those who are ready to talk need to find ways of doing this while respecting the reluctance of those who are not there yet. If you think your family needs help in doing this, you may want to ask a member of your father’s health care for assistance. You may also find help in reading this Virtual Hospice article - Living with Limited Time: Exploring Feelings

Hope changes as an illness progresses. At first, hope is a belief in a the possibility of a cure. This is a natural expression of a deep desire to have the person who is ill restored to health. When the illness progresses, as it seems to be doing in your father’s case, the focus of hope must change. It becomes more about the present than the future. Your hope may shift to making the most of whatever time is remaining while drawing on the memories and love you have shared throughout a lifetime. Later your hope may focus on getting the best possible care for your father as he grows weaker, and on finding new ways to give and receive love as he approaches death.

You never need to give up hope if you remain realistic, flexible, and open to others. Look at each day as full of possibilities. Consider every interaction between you, your father, and other family members an opportunity to support and strengthen each other. Hope that is damaged can grow again as you create ways to express your love of life and of each other every day.

There is no one right way to maintain hope. Your hope is influenced by your personality, the meaning you find in life, and the strength of your connections to family, friends, and the wider community. Here are some suggestions you and your family may find helpful in promoting hope during your father’s illness:

Explore ways your family can help each other through the changes your father’s illness has brought into your family life.

• Set short-term, flexible goals and make realistic plans to achieve them.
• Talk to your father about his concerns and work with his health care team to address them.
• Reminisce together and share stories of good times you have had over the years.
• Show your sense of humour, especially about any physical help or care you need to give your father.
• Draw on your spirituality or your connections to a faith community for comfort, inner strength, and meaning.

For more on maintaining hope check out this Virtual Hospice article:

Hope and Denial

Pain often affects someone’s sleep quality, amount of sleep, and ability to fall asleep. If pain is treated then sleep usually improves.

If the pain is treated and sleep is still a problem, there may be other options. A variety of medications may help. An anti-anxiety medication, which has sedative effects, can promote calm, so someone can fall asleep more readily. Often, a person who is dying feels anxiety, so a sedative can ease that also.

A person’s environment can significantly affect sleep. A hospital setting may not be restful, and may contribute to sleeping difficulties. Lowered lighting, decreased noise, a sleep routine and relaxation strategies may improve sleep without the use of medications.

Much of what can be expected during cancer treatment depends on the specific individual. Many treatments place some burden on a person’s body. This is usually temporary, but requires a period of recovery. People who generally are doing fairly well are more resilient and recover more quickly. Those who generally are feeling exhausted and without energy may be more affected by the treatment and have a harder time recovering. It’s important to explore such issues with the health care team, who can offer suggestions that may help in recovery. The health care providers have the information that will help in balancing the burdens and benefits of treatments.

With radiation therapy, treatment can have both local and general (systemic) effects. Local effects are in the area where the radiation is focused; general effects are the impact on the person’s overall condition.

Commonly the local effects of radiation are inflammation or irritation. For throat cancer, the inflammation and irritation can affect the skin on the head and neck, or the lining of the mouth or throat. If the lining of the mouth or throat are affected then the person can experience dry mouth, dental problems, hoarseness and changes to the person’s sense of taste. The radiation therapy team has ways to help with these symptoms. They include skin treatments, mouth rinses, and sometimes painkillers if there’s discomfort.

Radiation therapy for throat cancer can also affect a person’s ability to swallow. The inflammation and irritation in the mouth and throat can cause pain and burning during swallowing. Unfortunately, there can be long-term complications also, such as decreased saliva production and stiffening of the tissues and muscles needed for normal swallowing. Speech-language specialists can assess the ability to swallow and treat any issues that might arise. A nutritionist or dietician can provide advice and suggestions about food texture and other nutritional concerns.

The general effects of radiation therapy can vary. Most commonly, people may feel tired or fatigued. Some people feel nausea, which can be very effectively treated with new antinausea medications.

One of the most obvious effects of liver cancer is jaundice. This is a yellow discoloration of the skin and eyes, caused by a buildup of bile in the body. Bile contains a pigment called bilirubin that causes the yellow colour. Jaundice is a sign that the liver is not functioning well, and can’t move the bile to the intestine, where it’s normally eliminated from the body.

Another symptom that may be experienced with liver cancer is ascites. This is an accumulation of fluid in the abdominal cavity, which may be caused by the tumor blocking the normal flow of fluids in the body (such as the lymphatic system). Ascites may accumulate more quickly as liver cancer progresses. It can be uncomfortable and it may cause shortness of breath if there’s pressure on the diaphragm.

People with liver cancer may also have pain from the tumor in the liver. The pain is usually on the right side of the body, where the liver is located. There may be shortness of breath if the cancer has spread from the liver to the lungs. Liver cancer can progress quickly, depending on the type of tumor and whether the cancer has spread to other areas in the body.

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

Often your initial step in this process is to pull together a group of staff who share a common interest in palliative care and are committed to improving the quality of care offered to the residents and families in your long-term care facility. It is best if this group includes representatives from the various disciplines or departments involved in providing care in your facility. If possible, include an interested family member and a representative from the local palliative care team.

Engaging the support of administration staff is crucial to the success of any palliative care team. Discuss how they would like to be involved: do they want to be part of team, or, if not, how would they like to be kept informed? Ideally, members of your palliative care team will be viewed as leaders by their peers and can act as catalysts for change. They can encourage others to get “on board” with your activities and practice changes.

Once the team is formed, establishing goals and defining a role within your facility are the next steps. For example, will the team be responsible for ensuring necessary policies, procedures, and supplies are in place? Or perhaps the team will develop an education strategy for staff and families. Or will the team be involved in direct care by acting as consultants within the facility to help assess and plan care?

Other components of care often addressed by teams are:

• creating a comfortable environment for residents and their families (who may be spending more time at the facility);
• developing ways to offer information and support to the residents’ families during the final days of care and into bereavement;
• assessing the educational needs of staff and plan an education strategy;
• developing a strategy to acknowledge and support staff who also grieve the death of residents in their care.
  

Teams often start by brainstorming a “wish list” of ways they can improve the palliative care your facility provides. To help prioritize this list, the team should establish realistic objectives, develop a work plan with reasonable time frames, and identify ways to involve other staff and outside resources. Starting with one change and building on that success is a helpful approach.

Throughout the process, it may be very helpful to connect with other long term care facilities that have already begun this type of work and connecting with the local palliative care program staff or the local/provincial hospice office. They are potential sources for information, expertise, guidance, assistance with document development, or assistance with planning and delivering education sessions.

References

Wowchuk SM, McClement S, Bond J Jr. (2006). The challenge of providing palliative care in the nursing home: part 1 external factors. Int J Palliat Nurs, June; 12(6): 260-7.

Wowchuk SM, McClement S, Bond J Jr. (2007). The challenge of providing palliative care in the nursing home part II: internal factors. Int J Palliat Nurs, July;13(7):345-50.

Phillips JL, Davidson PM, Ollerton R, Jackson D, Kristjanson L. (2007). A survey of commitment and compassion among nurses in residential aged care. Int J Palliat Nurs, June;13(6):282-90.

If you feel that you’d like to be in touch, we encourage you to do so. You know best what fits for you and your friend: an email message, a phone call, a card or a gift, such as a book, a small plant or a bouquet of flowers.

If you decide to write or talk to her, you may be worried about what to say. Sometimes, the best place to start is by sharing what is on your mind and in your heart. Acknowledge that you have been thinking about your friend and that you care about how she is doing. Be honest and be yourself.

Be open to talking about whatever your friend wants to discuss. Most people provide cues, so listen for verbal signals indicating what your friend is comfortable or uncomfortable talking about.

The big question is often whether to be up front about the illness or whether to ignore it. Trying to ignore the illness is probably going to feel awkward. There isn’t a specific recipe that works in these situations, since everyone is different in how they live with their illness and, eventually, how they approach their dying. owever, if you have other opportunities to connect with your friend, not every conversation needs to be about the illness or its progression. Think about what you would have talked about together before she was ill.

If you offer to help, take your cues from your friend and perhaps from her close family and friends. Be realistic about your time and ability, and let your friend and those close to her suggest things you can do. They will be able to tell you what is helpful, or what works and what doesn’t.

Considering what you can do is valuable, but it’s also good to be mindful of what not to do. For example, if your friend shares a variety of feelings or talks about difficulties in coping, really listen to her. Avoid suggesting that she stay positive or saying that “things will get better.” You risk shutting her down if you do.

It’s important, too, not to give unsolicited advice about what your friend should or should not do. Sometimes in our efforts to be supportive, we may suggest things that work for us but not for someone else. Keep in mind that what your friend shares with you should remain private and should not be shared with others unless she asks you to do so.

People mainly need to be accepted for who they are and how they are. Your willingness to accompany your friend on a road filled with twists and turns requires openness, honesty and sensitivity. You also need a healthy dose of self-care and awareness of your own thoughts, feelings and needs.

It’s important to remember that a person’s needs and wishes may change dramatically over time. With advancing illness, your friend may find that she needs to limit visitors or save time for herself. Therefore, her circle of family and friends may become smaller as her energy and reserve lessen.

It’s important for your friend to feel that she can make decisions about who will help with what. As her illness advances, however, she may decide to reduce the number of people around her. Remain sensitive to her decisions, and don’t take it personally if she limits her contact with you. Respect her wishes and assure her that you understand and are available if needed.

See also: What Do I Say? and Tips for Visiting

If your mother was receiving regular pain medication at home, the same dosage needs to continue in hospital. It’s rare that a pain medication regimen is stopped altogether and given just "as needed" (what health care providers call “prn”).

One of two different things may be happening. Your mother may in fact be getting medications just as needed (prn), or she may be getting regular pain medication in a way you’re not aware of, and also getting additional doses as needed.

It’s important to ask the health care team to clarify which of these is happening. If your mother is in pain, ask the health care team about placing her on the dose she was using before being admitted, if that dosage in fact controlled her pain. If it didn’t, then her medication regimen needs to be reassessed.

If your mother is experiencing pain, you need to meet with the health care team to express your concern. You have a right to advocate for your mother if her pain is not being controlled.

Drowsiness or sleepiness is a common, temporary side effect of an increased dosage of morphine or other opioids. It usually takes two or three days to go away, but it can take longer. Occasionally it’s necessary to try other opioid medications to find the one that has fewest side effects for that person.

The overall fatigue that people feel with serious illness is generally due to a combination of factors: the illness itself, medications, any feelings of discouragement or depression, and possible complications such as a low blood count, decreased oxygen levels or an infection.

If fatigue persists and affects quality of life, it’s reasonable to investigate it, even when someone is in advanced stages of illness. It may help to change medications, treat complications, or use medications to improve energy.

There are several signs that can indicate that someone is nearing death:

• physical condition;
• eating;
• breathing;
• mental condition.

Physical condition

Deterioration in physical condition is usually the first sign that someone is near the end of life. The deterioration may be gradual or quick, and is reflected in the person’s level of energy and range of activity. There are four stages that a person usually passes through as death approaches:

Stage 1    performs regular activities;
Stage 2    tires quickly with exertion;
Stage 3    spends most of the time sitting or in bed;
Stage 4    doesn’t get out of bed at all.
 

Eating and drinking

People who are approaching death usually lose appetite and thirst and, as a result, lose a lot of weight. When someone is no longer eating or drinking, he or she usually has a few days to live, but may live as long as a few weeks if the person has reserves of energy.

Breathing

Changes in breathing are common. Some people develop long pauses in their breathing known as apnea. If a person is unconscious and unable to cough, there may be a pooling of secretions at the back of the throat. These secretions can make a rattling sound when the person breathes. The secretions aren’t distressing to the person because they are unconscious.

Mental condition

Closer to death many people become confused or restless. Eventually they may become unconscious or unresponsive to things around them. Most people become quiet near the end of life. It may be that because they have less energy and are too tired to participate in conversations. Commonly, people become reflective as death approaches and they spend more time thinking than in interacting with others. The final hours of life may bring signs of delirium, which is a sign of changing brain function that makes people confused and restless or lethargic and withdrawn.

One approach to estimating how long someone has to live is referred to as the momentum of change. If someone’s condition is changing from week to week, it’s a good indication that there are only weeks of life left. If there are changes from one day to another, there are likely days of life left. When changes happen from one hour to another, there are usually hours left. This is a general guideline. Sometimes a health crisis develops and someone dies sooner than expected. Families need to prepare for this possibility.

The philosophy of palliative care encourages care for the whole person. Such care tries to meet the person’s spiritual, emotional, cultural, and social needs, as well as physical symptoms. Your colleague’s needs have been shaped by her culture. If you do not know about that culture, you may feel you don't fully understand her needs, and may feel uncomfortable or unsure of yourself in reaching out to her.

The best way to find out what is important to your colleague and her family is to ask her. Let her teach you about what she finds appropriate and helpful. A simple question like “How can I be supportive to you during this time?” can help you learn what she may need from you. If an supportive relationship develops, some of the following questions may help you to understand and respect her unique values and needs:
“What should I know about you and your culture that will help me show respect and provide care?”
"What are some of the traditions that are important to you?"
"What beliefs or customs give you strength and comfort?"

Encourage your colleague to do things in her own way. Follow her lead and respect practices that may be different from your own.

These resources, used for teaching awareness of culture in health care, may offer you some ideas:
Presentation on culturally sensitive care
Module on culturally sensitive care

Every person has spirituality. Whatever moves or expresses your spirit or inner energy is part of your spirituality. In some senses your spirituality is expressed in every aspect of your personal and public life. It is just part of who you are – woven into and expressed through every thought, feeling, and action.

There are many definitions of spirituality. Any of them can be helpful in understanding this important yet mysterious part of life. Ultimately, none of them captures the whole reality, but what becomes clear is that spirituality has these core elements:

• Finding or making some kind of meaning in your life:
  Everyone deals with issues such as identity, suffering and hope. What makes such issues spiritual is that they raise questions about the meaning of life, life in general and your life in particular. Your spirituality is shaped by the answers you give these questions. This aspect of spirituality is examined further in this article:
  Finding Meaning and Purpose During a Health Crisis
• Learning to live in relationships:
  Consider your relationship with yourself, with others, with the natural world, with the human-shaped world, and with the transcendent dimension (referred to in religions by such names as God, Allah, Universal Truth, Creator, or Holy One, but by others as Higher Power, Life Force, Life Energy, Web of Life, or simply The Sacred).

The way we express our spirituality is shaped by our personal, family, and cultural experiences.
Some people express their spirituality in a religious way. This usually includes religious language, beliefs and symbols. People maintain their religion through individual practices and participation in the rituals of their faith community. Religious people often turn to their religious faith and community for comfort and strength in difficult times.

Spirituality can also be expressed in ways not considered religious. These are just some of the ways in which people can nurture their spirits:

• relating to friends, family, and neighbours in ways that give and receive love, support, kindness, guidance, loyalty, and forgiveness;
• expressing themselves creatively or artistically (e.g., woodworking or sewing, writing poetry or making music, painting or sculpting);
• appreciating visual or performing arts (e.g., attending a concert, visiting an art gallery, or going to a movie);
• reading books and engaging in conversations about the meaning of life;
• paying attention to the movements of their emotional lives, the stirrings of the spirit evident in sadness, longing, love, anxiety/fear, anger, joy, pride, hope, and compassion;
• enjoying the natural world (e.g., gardening or hiking, watching songbirds or sunsets, travelling to scenic places, spending time at a cottage, savouring the first snowfall or spring buds);
• connecting with their bodies through exercise, meditation, massage, dancing, eating and drinking, or sexuality;
• enjoying comedy and humour (e.g., light-hearted banter in everyday conversation, the capacity to see the joke in life’s discouraging moments, or comedies on the stage or in books or movies);
• trying to live ethically, by integrating justice and fairness, peace-making, or green practices into their lives.

Love, trust, and forgiveness are important in your search for meaning within relationships. You grow spiritually as you learn to do these things:

• love and care for yourself, express compassion for others, delight in the natural and human-made worlds, and cherish your place and participation in the web of life;
• trust your intuitions and conscience, develop trustworthy relationships, trust that meaning can be found in every moment and place of your life, discern whom you can trust, and trust that the universe (or higher entity) is friendly no matter what happens;
• forgive yourself for failures and wrongdoing, seek justice when you have been abused or wronged, let go of the desire for revenge when you have been hurt, accept that in the big picture you are accepted and valued just as you are.

Healthy spirituality gives a sense of peace, wholeness and balance among the physical, emotional, social and spiritual aspects of our lives. However, for most people the path to such spirituality passes through struggles and suffering, and often includes experiences that are frightening and painful. In these experiences you may struggle with questions such as these:

• What do people think of me?
• Where do I belong?
• How can I effectively express my love or anger?
• What does it mean to be true to myself?
• What does the future hold?
• What does dying and death mean to me?

Most of the fears behind such questions are in one way or another rooted in a fear of the unknown, a fear about areas of life that you don’t seem to have control over. Facing your fears openly and honestly helps you to figure out where you actually do have control, and to surrender your futile efforts to control what is beyond your power. Spiritual struggles are described further in this article;
Spirituality and Life-Threatening Illness

Fears, and the suffering that accompanies them, will always be part of life because unknowns are also part of life. However, fears do not need to cause panic. They can be viewed as invitations to open yourself to the resources and depths of your spirit, to the support and love of others who are also struggling to live meaningfully and to the larger spiritual realm that is beyond you. Opening yourself in this way can help you to live with hope, meaning and purpose, and inner peace in the midst of whatever circumstances you find yourself.

All these medications are opioids. This is a group of medications that target certain receptors in the body in order to relieve pain.

When treating pain with opioids it’s typical to start with a low dosage, monitor to see how it’s working, and gradually increase the dosage until the person is comfortable. The monitoring is needed to check for side effects. Sometimes the medication is switched. Commonly people have some additional medication prescribed, called breakthrough medication. This is an extra dose for any flare-up of pain, that is, an occasional period when the pain is worse than usual and “breaks through” the regular level of pain relief.

Morphine is the most commonly known pain medication. Hydromorphone (brand name Dilaudid®), sometimes called hydromorph, is chemically similar to morphine. Hydromorphone is more potent than morphine, which simply means that a smaller quantity of hydromorphone has the same pain relieving effect as a larger quantity of morphine. If someone is switched from morphine to hydromorphone it’s important to realize this. For example, someone taking 10 mg of morphine may be switched to 1 or 2 mg of hydromorphone. The degree of pain relief is the same.

Both morphine and hydromorphone are used to treat moderate to severe pain. Morphine is often the first medication used. For some patients, however, hydromorphone may be a better first choice. People who are older may have less trouble with side effects such as sleepiness or confusion with hydromorphone. People whose kidneys are not fully functioning may also do better with hydromorphone, because it is removed from the body by the liver not the kidneys. A physician takes these factors into account when deciding which medication to use.

Usually when people have become adjusted to a short-acting medication, they are switched to the slow-release form. Both forms typically take effect within half an hour. The short-acting form typically lasts for four hours and the slow-release usually lasts eight. So the slow-release form doesn’t have to be taken as frequently. Sometimes people with stable pain are switched to a fentanyl patch, which lasts even longer. People with a fentanyl patch continue to have oral pain medication for breakthrough pain.

The fentanyl patch (Duragesic®) is used for people who have stable, chronic pain and require strong pain medication. It should only be used once a person has been on another opioid for several days and the pain is well managed. It is not used when people have intermittent pain, acute pain such as the pain following surgery, or need a lower level of pain relief. It’s useful for people who have difficulty swallowing, because the medication is absorbed through the skin. It’s also helpful for people who sometimes forget to take their medications, as it only needs to be applied every three days instead of being taken orally several times daily. It’s important to ensure the patch is always disposed of properly, as it may contain some medication when it’s taken off. The medication in the patch could harm a pet or child.

Many factors need to be considered when deciding which pain medication is best for a given situation. Often there’s more than one option. The most important thing is to match the dosage to the level of pain, and to monitor closely to make sure the person is consistently comfortable. People may say the opioid medication isn’t working. This usually means the person isn’t getting an adequate dosage. No matter which medication people use, if they’re not comfortable, they need to talk with the health care team so medications can be changed to give better pain relief.