Asked & Answered

Several factors are taken into account when deciding whether to continue radiation treatments:

• the wishes of the person who’s ill;
• the amount of radiation already delivered to the target area;
• the overall strength and energy of the person who’s ill.

Patient’s wishes

The main consideration is what the patient wants. If the person doesn’t want further treatments, then other issues are irrelevant.

Amount of radiation already received

The health care team needs to consider how much radiation the target area has already had. There’s a point where more radiation simply causes damage, and the damage can be worse than the problem being treated. Each part of the body can take only so much radiation over a lifetime. A radiation oncologist monitors the amount given, and doesn’t go beyond the lifetime limit. The spine and brain are areas of special concern, as radiation damage to those areas causes loss of nerve function.

Overall strength and energy

Although radiation is given only to a specific area, it takes a toll on the whole body. It usually makes people feel tired and drains overall energy. This is usually temporary, but if someone’s energy reserve is very low, it’s hard to bounce back. There are times when radiation will not cause local damage, as levels are still below the lifetime amount, but the person is too weak to tolerate more treatments. This is a difficult assessment. It’s based on overall strength, independence, and how quickly things are changing.

Sometimes when people are told that they won’t receive more of a particular treatment, they worry that it means there’s nothing more to be done. This is far from true. It’s simply that the focus of care shifts. The person’s comfort becomes more important than the illness. There’s much that can be done to improve comfort and quality of life.

Safety considerations when using opioids

As health care providers taking care of palliative care patients, we need to educate patients and families about the safe use, handling and storage of opioids. This quick consult looks specifically at the safe handling of fentanyl.  For safety considerations when using opioids in general, please see:  What is happening with the opioid crisis in Canada? What should I know to use opioids safely with palliative care patients?

In addition to the precautions generally taken with opioids, fentanyl brings unique challenges that must be considered when it is used in the palliative care patient population.

Use of the transdermal fentanyl patch

To reduce and prevent harm, educate patients and families about these important safety points when the long-acting transdermal fentanyl patch is being used.

• Ensure patients understand that medications are ONLY to be used by them, not by others.
• The long-acting transdermal fentanyl patch formulations are not to be used when a patient is opioid-naïve. Patients need to have consistent pain and be on a stable dose of strong opioids prior to starting a fentanyl transdermal patch. This route of fentanyl medication delivery should not be used for acute or poorly controlled pain.
• An increase in body temperature or application of excessive and continual heat directly to a transdermal fentanyl patch could cause an increase in the rate of absorption of the fentanyl and should be avoided. Heat sources include heating pad, electric blanket, sauna, hot tub, heated waterbed, excessive sun exposure or strenuous exercise. Avoid overheating and watch for signs of opioid toxicity. Patients who suddenly develop fever may also be at risk for increased absorption.
• Place the transdermal fentanyl patch on an area with adequate subcutaneous tissue. Keep in mind that pharmacokinetics may be altered in cachectic patients whose reduced fat tissue may prevent reliable medication release. They therefore may require a higher fentanyl patch dose. 
• If you experience any issues with transdermal fentanyl patch adherence, please see: What advice can you offer when patients have difficulty with fentanyl patch adherence?
• Wear gloves when handling the placement or removal of the patch on a patient. Follow the fentanyl transdermal product monograph for handling.
• Do not place patches into the garbage. To ensure safe disposal of used patches, review your local or organizational policies.

For more detailed information on conversion guidelines and initiation of a fentanyl transdermal patch, please see the product monograph or Fraser Health Hospice Palliative Care Program Symptom Guidelines on opioid management. ^[1]

Use of liquid preparations

The liquid preparation of fentanyl or sufentanil may be delivered by the transmucosal route (intranasal, sublingual, buccal) to manage incident pain or incident dyspnea. Note that this practice is off-label; prescribers should be familiar with this use or seek advice from those who are. Incident symptoms are typically intense, brief and predictable, so the ideal benefits are achieved by the use of such short acting, strong opioids with a fast onset of action. If the transmucosal route is used, caution should be taken as the medication is likely provided in a high concentration formulation. Appropriate education about this route of medication delivery and safe medication handling and storage is essential.

References

1. Fraser Health Hospice Palliative Care Program.  Symptom guidelines: opioid management. 2016. 

Other references

Canadian Public Health Association (CPHA). Fentanyl’s path of death and destruction: June 1, 2017.

College of Physicians and Surgeons of British Columbia. Professional Standards and Guidelines: Safe Prescribing of Drugs with Potential for Misuse/Diversion. (Revised October 28, 2016).

Harlos, M. Palliative Care Incident Pain and Incident Dyspnea Protocol. 2001.

National Pain Center. The 2017 Canadian Guideline for Opioids for Chronic Non-Cancer Pain.  2017.

Your first step is to consider the population you hope to serve and how you will respond to its needs. Many hospice initiatives arise because of the focus of special interest groups. For example, a group may have a disease focus (such as HIV and ALS), a cultural focus or a geographical focus. Decide your focus and set up a working group.

Be sure to align your group with your local health authority and government because these entities will likely have a stake in ongoing operational issues. Your provincial or territorial hospice palliative care association and the Canadian Hospice Palliative Care Association can be helpful partners and sources of support.

Next consider the type of care you will offer. Will you provide care throughout the palliative phase, including actively dying (which requires a significant amount of skill and resources)? Or will you focus on respite care (which would have less intense resource implications)? Will you admit patients on a 24/7 basis (including emergent admissions), or have scheduled admissions during regular working hours?

Once you have decided whom you will serve and the type of care you will offer, assess the need for your services. How many people might benefit from such a facility in a year, and where are they now? If people are mostly in acute care facilities, you may be eligible for government funding because you will be freeing up acute care beds.

Knowing the kind of care you will provide and the volume of people you will serve will help you determine both the type and size of your facility and its operational costs. Operational costs are often a major issue for hospice development. Capital costs, such as buildings, are more attainable through donations and fundraising campaigns. Operational costs, however, are an ongoing issue that donors tend to be less enthusiastic about.

You will also need to explore staffing structure. Usually, you can contact other Canadian hospices to see how they are staffed. Staffing also involves consideration of unions and liability issues. If you intend to provide around-the-clock medical care, you will need to address the critical issue of medical care because many physicians no longer take after-hours calls.

We encourage you to link with other groups who have successfully developed residential hospice facilities in their communities. Fraser Health’s Hospice Palliative Care Program and many community groups throughout Ontario have expertise in this area. In Programs and Services, you can search by province to find palliative care programs and residential hospices closest to you.

You will find standards and guidelines for developing a hospice facility in Fraser Health Hospice Residences: Creating a healing & caring environment at the end of life. You will also find practical information in How to Develop a Community Residential Hospice Handbook & Toolkit, developed by the Hospice Palliative Care Ontario.

A decision to begin palliative care takes in many factors. Ideally the decision includes a discussion with the health care team, who can offer information about options and available support. Several questions can help determine when palliative care becomes the main focus of care:

• What options are available for treatment?
• What does the person living with the illness want?
• What options are available for palliative care or symptom control?
• What is the nature and the course of the illness?

What options are available for treatment?

If someone has received all the treatments that might change the course of the underlying illness, then the next step is to focus on comfort. In this situation, the timing of palliative care is mostly determined by the illness and its treatment.

What does the person living with the illness want?

Some people choose a comfort-focused approach right from the time of diagnosis of a progressive illness. For instance, someone may have several treatment options, such as surgery and chemotherapy, but after reviewing them carefully with the health care team decides against them. In these situations, the timing of palliative care is mostly determined by the patient’s wishes.

What options are available for palliative care or symptom control?

Hospice or palliative care programs have criteria for their services. Typically someone who has less than six months left to live can be eligible. Someone with a prognosis of a few years can still choose a comfort-focused approach. This person isn’t usually eligible for a formal program, but can still get advice on pain and symptom control through consultation services. In this situation, the timing of hospice care is mostly determined by the availability of palliative care services.

Resources: Programs and Services

What is the nature and course of the illness?

The path of a progressive illness, such as an incurable cancer, can often be anticipated. It’s usually clear when it’s time to focus mainly on comfort. At this point a person's condition appears to be declining steadily and the ability to function independently becomes a challenge. With a chronic condition, or when someone has several medical problems but no specific terminal diagnosis, it’s harder to recognize terminal stages. Setbacks or complications can happen throughout the illness and may be treatable and reversible. In early stages, palliative measures such as pain control may be only a small part of overall care. As the illness progresses, some previously reversible problems become irreversible, or the burden of treatment outweighs its benefits. Then the focus of care turns increasingly toward comfort. For example, someone with lung disease may have had pneumonia previously, and had treatment in hospital to overcome the infection itself. With a palliative approach, symptoms such as shortness of breath are treated, while treatment for the pneumonia itself may or may not be given. The change of focus can come from the patient, or it can be determined by the illness. In such situations, it’s best to integrate palliative care into overall health care, rather than to choose a specific starting point.

Increasingly, palliative care advocates promote a combined approach to care for patients with life-threatening illnesses. This means that palliative care provides comfort even while a disease is being treated. Advocates believe this approach helps people make more informed decisions about their care. The World Health Organization (WHO) defines palliative care as "applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life."

A person doesn’t have to be involved in a formal program to receive palliative care. In some areas, people can get palliative care from their health care team, and become part of a formal palliative care program near the end of life. The criteria for palliative care services can vary. The point is that just because someone isn’t a patient in a designated palliative care unit or part of a palliative care program doesn’t mean that palliative care isn’t or can’t be provided.

A need for laxatives doesn’t mean there’s a bowel obstruction. People who are seriously ill often have trouble with bowel function. Laxatives are used to treat this before it has a chance to create a bowel obstruction.

Two main reasons why a person who’s ill may need a laxative are:

• Some cancers affect how the bowel works. Any tumor located near the bowel may press on it and make it difficult for the bowel to work properly. For example, ovarian cancer may do this because the ovaries are located near the bowel.
• Many medications affect how the bowel works. For example, opioid medications, such as morphine or Dilaudid, cause the bowel to slow down and not work well. Someone taking such medications needs to take a laxative also, in order to promote bowel movement.

As long as someone is passing regularly formed stools (stool consistency unchanged), and reasonably frequently (at least every three days), then it’s unlikely that person has a blocked bowel. A bowel obstruction produces abdominal pain that’s different from pain related to the underlying illness. It also produces nausea. The person is unlikely to pass any stool at all. At times there may be diarrhea or loose stool, as this can pass around a blockage. X-rays are often used to determine if someone has a bowel obstruction.

It’s important to contact a health care provider immediately if any of these symptoms appear:

• no bowel movement within three days;
• unusually high number of stools per day;
• blood in the urine, stool or anal area;
• no bowel movement within one day of taking a laxative;
• persistent cramps and vomiting.

Several factors determine the best place for providing care to a person with an advanced illness. This type of decision requires a balance between patient and family needs, and the availability of resources to meet those needs.

Patient and family considerations include the following:

• patient and family preference;
• physical ability to manage aspects of care such as hygiene and movement/mobility;
• medical condition and needs such as administering medications and managing symptoms;
• economic, emotional, social, and spiritual needs.

Resources available to meet these needs vary among areas and programs, and may include the following:

• home care services;
• the healthcare team;
• technical resources for symptom management, such as pumps and injections.

When someone wants to be at home, healthcare providers ask, "Can this person manage at home?” Someone who lives alone, who is physically weak and whose burden of illness limits independence, is not safe at home. Alternatives can include a care home, a hospice, or a hospital. A person’s life expectancy often plays a role in determining the care setting.

Availability of resources is equally important in deciding where to care for someone. A person who wants to stay home needs support from family and/or friends, as well as their healthcare providers. The healthcare team won’t be in the home around the clock, so family and friends must be willing to participate in care. The healthcare team must anticipate possible symptoms so they can provide medications and other resource supports. In some parts of Canada, home care services may include providers trained in palliative care. Cooperation between the healthcare team and family or friends, can prevent possibly distressing symptoms and allow someone to die in comfort at home.

The choice of where to care for someone may come down to providing care in a setting where symptoms can be managed:

• A person may need hospital care. In some parts of Canada, there may be units intended to have patients stay in hospital for a long period. In other areas palliative care programs are community-based, and have a limited number of palliative care beds. In such programs the patient’s care is managed in the community, but they may be admitted to a designated palliative care unit within a healthcare facility, if necessary. The palliative care team there treats difficult symptoms and works to stabilize the patient. When that is achieved, the patient leaves the unit and goes back home, to a hospice, or to a care home.
  
  
• A person may die at home. Symptoms can often be managed at home. More planning is needed, but medications and other aspects of care are often the same as they are in a hospital. Some procedures can only be done in a hospital, and may require a short stay or a visit to a clinic.

One place is no better than another for receiving care. It’s usually the needs and wishes of the patient and family that determine the best place to receive care.

Dyspnea is a common symptom in end-stage heart failure, and, in addition to optimizing cardiac medications, opioids can be very effective in reducing the sensation of air hunger. However, there is often some reluctance to prescribe opioids in patients with respiratory compromise, and there is some conflicting information about the safety of opioids in acutely decompensated heart failure.

In general, the most effective approach to relieving dyspnea in heart failure is to improve volume status and cardiac output; that is, to specifically treat the heart failure. However, in end-stage cardiac disease, dyspnea often persists in spite of maximal treatment of the heart failure.

In the management of dyspnea in heart failure, Goodlin stated that “dyspnea and fatigue seem to diminish with normalization in volume status. Opioids are the only specific intervention that has been tested in treatment of dyspnea. Other measures such as oxygen and nitrates may be worth a trial for dyspneic patients. Exercise may reduce dyspnea and fatigue.”[1]

In the very specific circumstances of acutely decompensated heart failure, some concerns have recently arisen about the safety of morphine. One study showed that patients receiving morphine in such circumstances have worse outcomes.[2] It is not clear whether this reflects the fact that morphine was used in more seriously ill patients, or if there are other factors at play. One theory is that patients in acutely decompensated heart failure require high sympathetic tone, and opioids may help dyspnea by interrupting excess sympathetic outflow.[3] If morphine is used in an acute-on-chronic decompensation of heart failure, it should be with conservative initial doses and gentle titration.

However, it is important to be aware that the above study did not refer to patients at end of life, but rather to patients with an acute decompensation of chronic heart failure. Opioids have an important role in symptom management at the end of life for patients with advanced heart disease, and should be used in such circumstances. The imperative to address comfort in a patient dying of cardiac failure should be the overriding goal in such situations, rather than being hindered by concerns arising from a single retrospective study that was not focused on end-of-life care.

Reviews of the literature suggest that dyspnea as the target symptom should not influence whether morphine, hydromorphone or fentanyl is used. While the body of evidence for opioids in dyspnea is largest for morphine, there is evidence for hydromorphone and fentanyl. The selection of opioid is determined by considerations such as renal function, available routes of administration, previous history of adverse effects, existing opioid tolerance, and so forth.

References

1. Goodlin SJ. Palliative care for end-stage heart failure. Curr Heart Fail Rep. 2005;2:155-160.

2. Peacock WF, Hollander JE, Diercks DB, Lopatin M, Fonarow G, Emerman CL. Morphine and outcomes in acute decompensated heart failure: an ADHERE analysis. Emerg Med J. 2008;25:205-209.

3. Johnson MJ, Oxberry SG. The management of dyspnea in chronic heart failure. Curr Opin Support Palliat Care. 2010;4:63-68.

Other references

Clemens KE, Klaschik E. Effect of hydromorphone on ventilation in palliative care patients with dyspnea. Support Care Cancer. 2008;16:93-99.

Mahler DA, Selecky PA, Harrod CG, et al. American College of Chest Physicians consensus statement on the management of dyspnea in patients with advanced lung or heart disease. Chest. 2010; 137: 674-691.

Sitte T, Bausewein C. Intranasal fentanyl for episodic breathlessness. J Pain Symptom Manage. 2008;36:e3-e6.

Communication between team members requires ongoing attention and effort to make it work in the best way possible. Any conflict can create barriers to effective communication. This affects the team as well patients and their families.

A good place to start is with self-examination and reflection. Be aware of what you are thinking, how you are reacting and how you are feeling. Ask yourself:

• What is going on for me?
• What is going on for the other individual(s)?
  

With any kind of conflict, it helps to keep it out in the open. If you internalize it, your future interactions will be affected. Try to understand your differences and work to improve the situation. Assess not only what you are thinking and feeling and but also what the another person may be experiencing.

Cultivate dual awareness by being aware not only of what is happening for the patient, but what is happening for you and others in your work environment. Kearney et al. state that "self-awareness involves a combination of self-knowledge and development of dual-awareness … a stance that permits the clinician to simultaneously attend to and monitor the needs of the patient, the work environment, and his or her own subjective experience."[1]

Ultimately, we can only be responsible for ourselves and how well we are communicating. We might ask ourselves:

• Is my assessment thorough?
• Am I communicating the details clearly and concisely and in an organized fashion?
• Is it clear what I am asking?
• Am I over-reacting?
• Am I respectful?
• What is my intent?
• How can I represent myself better?
• How can I best advocate for the patient?
• Am I open to discussing varying points of view?
• Am I willing to seek a better understanding of other team members?
  

It is important to let the other people know that they are being heard. Be positive and curious. Acknowledge aloud what someone is saying. Arber points out the importance of asking questions in developing interdisciplinary team relationships and care planning for patients. It is a way of keeping the exchange of ideas and information flowing.[2] Arber states that "specialist nurses use questions in a strategic polite manner to achieve their professional agenda, to present their professional identity, and to manage the tensions involved in interprofessional working."[2]

If you feel frustrated, confused or concerned about a patient and wish that your team could do more to help him or her, communicate this in a positive, respectful way. Doing so can open the door to further exploration of what could be done or tried. The following examples may help you start the conversation:

"We are all trying to do our best here, and I am wondering how we can best work together on this?"
"I wish we could help this person feel better than he or she is currently feeling."
"Can you help me to understand how you decided on that medication (or approach)?"
"Do you remember when we tried this for Mr.___ and it worked?"
"I agree it's worth a try. Perhaps we could set a trial time frame and then revisit our decision. If this approach doesn't seem to be making a difference in 48 hours, maybe we could try this...?"
"In reviewing the situation with the patient, he would really like to give this a try." 

If the situation is one where you feel the need to advocate on behalf of the patient, keep the focus on the patient and how you as a team can work together to do your best for the patient and/or the family.

The “negotiation” of clinical options among members of a health care team is a learned skill, and it may require different communication strategies depending on the team members involved. Again, the key is to be open to both sharing your experience and being receptive to learning about the experience of others. We may not always get “our way,” and that is sometimes a good thing. There is often more than one way to achieve a desired outcome, and we can all learn from each other’s experience. Always remind yourself that the focus of discussions and decisions should be based on what the patient and family desire and what is in their best interests.

Here are some communication strategies you can try with team members:

1.    Organize your assessment findings. Sometimes we unfairly expect our colleagues to reach the same conclusion without having the same information as we do. Think about the objective and subjective findings, the context of the given situation, and patient/family perspectives when developing the narrative you want team members to consider.

2.    Consider your approach. Acknowledge and respect the knowledge and perspectives of other team members while sharing your personal view.

3.    Recall past successes with other patients. For example, start by saying:

“Remember when you did x, y, z for that woman we cared for under similar circumstances? That worked well. Do you think that may help this patient?”

Context is so important and in the above example, you present a possible solution as another person’s idea.

In some circumstances, speaking with a team member one-on-one may be effective. At other times, you may need to meet as a team to reach a consensus. Over time, you will learn for yourself which approach works best in which situation.

Turning to the evidence is an important starting point for guiding a team's decision making and resolving conflict. Recognizing the importance of research and evidence-based practice in palliative care is crucial, but often there are situations where the best approach to day-to-day care practice is not as straight forward. These situations usually require:

• ongoing assessments and discussions with patients, families and team members;
• revisiting decisions; and
• adjusting care plans to address concerns, control symptoms and optimize comfort.
  

References

Kearney MK, Weininger RB, Vachon ML, Harrison RL, Mount BM. Self-care of physicians caring for patients at the end of life: “Being connected . . . a key to my survival". JAMA. 2009;301(11):1155-1164.

Arber A. Team meetings in specialist palliative care: asking questions as a strategy within interprofessional interaction. Qualitative Health Research. 2008;18(10):1323-1335.

Hydromorphone (Dilaudid®) is a painkiller in the opioid family, as is morphine. Hydromorphone is chemically related to morphine, and very commonly used for moderate to severe pain.

Often people are switched from morphine to hydromorphone to treat possible side effects from ongoing use of morphine, such as confusion or uncontrolled jerking movements. All opioids, including hydromorphone, can cause these side effects, but it takes a while for them to develop. Switching opioids allows the body to clear out the previous medication.

Hydromorphone may also be used instead of morphine if the kidneys aren’t functioning well or if someone is in kidney failure.

Technically hydromorphone is stronger than morphine. This simply means that a smaller quantity of hydromorphone has the same pain relieving effect as a larger quantity of morphine. It doesn’t mean it’s a better painkiller or has stronger side effects. The amount given is suited to the pain. The specific number of milligrams is not meaningful as long as pain is controlled. As with morphine, there’s no specific dose that is "a lot" or "too much." It all depends on the pain relief.

Your patient is carrying a double burden – his health problems and his self-blame for not being healed. It may be that his sense of failure about not being healed is reinforced by members of his family or faith community who believe that prayers offered in deep faith will be answered. As his prayers for healing go unanswered, he may also feel abandoned or rejected by God. This may be tied to questions about whether his illness is a sign of God’s judgement of him for some sin or failure in his life. It is also very likely that fear of dying and sadness about coming to the end of his life are part of his spiritual struggles.

Your patient’s illness is having a negative impact on his faith in God and his experience of God in his life. Rather than being a resource to help him in cope with his illness, his beliefs about prayer and healing have added to his suffering. These struggles detract from what is important to him in whatever time remains in his life. He is in spiritual distress.

When spiritual distress is identified, a referral to the team’s spiritual care provider (chaplain) is usually appropriate. If your team does not have a spiritual care provider, you could suggest arranging for your patient to talk about his spiritual struggles with a spiritual leader from his faith community. If you feel comfortable, you may want to ask your patient the following questions:

• “What can you tell me about some of the miracles within your tradition?”
  
• “When you think of accounts of miracles within your tradition, are these events dependent on the faith of the person or on God's faithfulness? How does this relate to your current situation?”
  
• “Is it possible that the miracle God has for you is not physical healing, but spiritual healing?”
  

Your patient’s struggles also give you an opportunity to reflect on your own beliefs about faith, hope and healing. You may find it helpful to make quiet space and unhurried time in your life to consider these questions:

• What does it mean to have hope in the face of a serious prognosis?
• How does hope change when our focus moves from the future to the present?
• What meaning and growth can we find in the midst of a life-limiting illness?
• How do our images of God affect the way we pray about an illness?
• In what ways do miracles involve “a shift of perception?”[1]
• How do we use religion as a way to avoid facing situations too uncomfortable to accept?
• What are some of the things that have helped you in the past when it seemed as though all hope was lost ?[2]
• What does healing mean to you? What does wholeness mean to you?[2]
  

As you reflect on questions such as these and find your own answers, you will have a better sense of how to talk with your patient about his struggles. Your task is not to challenge or dispute his beliefs, but to look for opportunities to respectfully share perspectives that are meaningful to you. Your respect and concern for his struggle and readiness to share your own spiritual perspectives may help him look at his situation differently and find resources in his faith that provide comfort, hope and courage.

References

1. Schucman H. Course on Miracles. 3rd ed. Mill Valley, CA: Foundation for Inner Peace; 2007.

2. O’Rourke M, Dufour E. Embracing the End of Life: Help for Those Who Accompany the Dying. Toronto, ON: Novalis; 2012.

Research suggests that children should go to funerals if they want to. It gives children a chance to see grief and learn about it. If your son will attend a service, talk with him ahead of time about what he can expect. For example, if there will be an open casket, let him know he will be seeing his grandmother’s body. He may have many questions, and you may not have all the answers. It’s okay to say you have to think about it for a bit, and talk to him after you’ve had a chance to collect your thoughts.

Many parents find it helpful to look for children’s books about dying. You can talk about the characters in the book and relate their circumstances to what’s happening in your lives. This is an excellent way to discuss death and dying with young children.

A memorial service can be a very helpful way for families, their neighbours and friends to mourn. It gives people an opportunity to

• express their grief;
• remember and honour the person who has died;
• experience a supportive community in the face of loss;
• consider the meaning of life and death within the web of life.

Planning a memorial service may seem like a daunting task because you usually need to do it at a time when you are also coping with grief. However, creating a memorial service that suits you and your family and that honours your father can give you a focus in your time of loss.

You do not need to do it alone. Talk with other family members about what would be meaningful to them. Ask how they would like to be involved in the planning or leadership of the service. Decide together who would be the best person to be the emcee or leader for the service. Consult with your funeral director or a trusted and supportive religious leader for tips about what to include or exclude and how to put the service together. Their experience in planning such events can help you figure out how to make your hopes for the service a reality.

As a family, you will likely want to consider the location, the timing, and the program of the memorial service.

In deciding where to hold the service, consider the following:

• Who do you expect to attend?
• Is there a location that would reflect who your father was?
• What setting suits the kind of service you want?
• If you want music or videos in the service, can they be used in this setting?
• Does the setting allow everyone to hear and see those participating in the service?
• Can you arrange for refreshments following the service so people can visit with each other?
• What are the costs associated with using this setting?

Many people choose to have a memorial service in a funeral home. In this setting, funeral directors can help you arrange many of the details you may wish to include. However, you may want to consider other settings. Memorial services are also held outdoor, in community centres, residences, and at the place of burial or scattering of ashes. What is important is that the place is suitable for people to celebrate your father’s life, comfort each other, and experience a sense of community.

In some communities there is an expectation that the memorial service will happen within several days of the death. This opportunity for public mourning seems to help healthy grieving. However, depending on your family’s circumstances, you can plan for a memorial service weeks or even months after your father’s death. In this case you may have a small gathering of family and friends who are available for the burial or cremation soon after the death, with an announcement that a memorial service will be held at a later date.

If your father’s body is being cremated, you may choose to place or scatter the ashes at a later date. This can be done in a small, intimate circle of family and friends in a way that allows you to share memories of your father and support each other in your loss. Ashes can be placed in a niche, memorial garden, or burial plot, or you may choose to scatter or bury your father’s ashes in a location that held special meaning for him.

There is no right or wrong way to hold a memorial service. However, usually families and friends find it most meaningful to have a service that includes honest and loving references to the person who has died. Some or all of the following may help achieve that:

• words that acknowledge your father’s death and the emotions of those who are mourning;
• stories, pictures, videos, or music that help people remember your father;
• simple actions like lighting candles or placing flowers at the casket or urn;
• playing or singing music your father enjoyed or your family finds comforting;
• silent reflection (perhaps with music) with an invitation to recall a favourite memory of your father and quietly give thanks for him;
• readings that speak to your grief and affirm life in the midst of loss and death;
• time for informal visiting and refreshments;
• a program pamphlet that includes the order of service and the readings and words of the music used.

You may find helpful readings and prayers in this book:

Sacred Rituals: Creating Rituals for Embracing the End of Life by Megory Anderson.  

For more guidance in planning your father’s service these Virtual Hospice articles may help:

Rituals to Comfort Families

Planning A Funeral

Amyotrophic lateral sclerosis, commonly called ALS or Lou Gehrig’s disease, is a progressive disease that affects the nervous system. The disease eventually affects someone’s mobility, independent functioning, communication, swallowing and breathing.

Generally, care for people with ALS includes these considerations:

• the illness itself;
• the impact of the illness on daily functioning;
• planning for care when eating and breathing become difficult;
• planning for issues arising near the end of life.

In early stages of the illness attention is give to approaches that may slow disease progression. A person with ALS is assessed by a neurologist, who is up to date on the latest medications that may help. The person also may be assessed by a specialized team, which can include a speech-language pathologist, physiotherapist, occupational therapist, and dietician or nutritionist. These health care providers work together to develop a plan that helps the person function as well as possible throughout the course of the illness.

Swallowing difficulties can be addressed by speech-language pathologists, dieticians or nutritionists. They can suggest ways to adjust food texture, and calorie intake as well. There may come a time when someone can’t swallow. At that time a feeding tube or intravenous fluids become options to be discussed. The person with ALS may decide to refuse artificial replacements for eating and drinking, and may choose instead to focus on comfort. This is an individual choice, and each person must decide what’s best for her or him.

If breathing becomes weak, breathing machines or ventilators will likely be offered as possible interventions to help a patient breathe. Two machines are commonly used. One is referred to as Continuous Positive Airway Pressure (CPAP), the other as Bi-level Positive Airway Pressure (BiPAP). Each supplies oxygen through a mask that fits over the face. The oxygen is under pressure, which helps the lungs expand. If breathing becomes even weaker, then a machine called a ventilator may be considered. This delivers oxygen directly into the lungs through a tube placed into the trachea. As with food and fluids, some people may choose to refuse artificial breathing assistance. If so, then the focus of caring for this person is on comfort.

Some people with ALS have pain. This can be controlled with opioids such as morphine, which are adjusted as needed. Opioids also help if someone feels short of breath.

Many important issues arise as the end of life nears, which require decisions by the patient and family. The person with ALS and the family need to make decisions about care, or about other matters. Decision making is best addressed before the need arises, while people still have the strength and capacity to take part in discussions.

It’s normal to be concerned about what’s happening and not to know what to say. It may help to come at this problem from a different angle. Sometimes it’s good to look at what’s behind a symptom. Your mother may find some meaning in putting up with pain without regular medication.

She may want to try to overcome the pain on her own, and this may be her way of trying to fight the disease that’s taking over her body. She may feel this is the only control she has right now. She may feel that taking pain medication means the cancer’s getting worse and she’s "giving up." She may worry about what medications will be used in the future if her pain worsens and she is already taking a strong pain medication now.

People can get defensive and shut down if they’re told to take pain medication without being educated about it. It may help to talk to your mother about why she’s refusing to use her pain medication. You may want to let her know how you feel about what you’re seeing, and ask her unthreatening questions. Consider words along these lines: "It appears to me that you’re in pain. It hurts me to see you this way and I’m really concerned about it. When you refuse to take regular medication, you have pain instead of relief. Why is it that you don’t want to take medication regularly? I’d like to know so I can try to understand what you’re going through. I love you very much and I want to see you comfortable. I’m wondering if I can do anything to help you." This approach may not work, but it’s worth a try. You may be surprised at your mother’s response.

It may help to talk to your mother’s health care team. It’s best to do this in her presence, as otherwise she may feel you’re interfering and going behind her back. If your mother is afraid of the medication and possible side effects, her heath care providers may have ways to minimize those. They also have information to help your mother better understand pain control.

When diabetes treatment is focused on making someone comfortable, the main goal is usually to avoid low blood sugar levels. Low levels cause the most symptoms in the short term and are most risky for the patient. There isn’t much margin for safety if they go even lower. So it’s preferable to have high levels rather than low.

It’s reasonable to aim for blood sugar levels in the 10-20 range. This means there will be times when levels are in the high 20s. As long as it doesn’t last more than a few days, and as long as fluid intake is maintained (with fluids that don’t contain sugar), then this is acceptable. In the short term, blood sugar levels in the 20-30 range usually cause increased thirst and urination. If levels stay in that range then the increased urination can cause serious dehydration, and even lead to coma.

When the goal of care is a person’s comfort, then diabetic medications may be reassessed, and testing and treatment simplified. Sometimes insulin can even be discontinued. If blood sugars are maintained without dipping too low, then testing can be reduced to every second day or to two or three times a week.

In the last days of life, a person probably isn’t eating and is drinking very little. At this time discussion with the patient and the health care team will focus on how often to monitor blood sugar levels and how to treat levels that are either too low or too high. The person’s overall condition will affect the monitoring and treatment.

Alzheimer disease is a progressive disease of the brain. It’s characterized by loss of memory, judgment and reasoning, changes in mood and behaviour, and eventually a reduced ability to perform the activities of daily living, such as eating, dressing, bathing and toileting.

In end-stage Alzheimer disease, the brain is no longer able to tell the body what to do. It can be very difficult to predict the length of Alzheimer disease, and each person’s experience of the illness is unique. However, the disease does follow a general pattern as it progresses.

Alzheimer disease slowly depletes a person’s ability to function. While it generally starts with lapses in memory or judgment, it progresses until the person is unable to communicate, make decisions, remember, or perform complex activities. Eventually, a person with Alzheimer disease has trouble with bodily functions, such as swallowing, bowel and bladder control, and coughing.

When swallowing is hard, food may get into a lung, which can result in pneumonia. Difficulty swallowing can limit a person’s intake of food and fluids. But people with advanced illness have decreased appetites and probably won’t feel hungry even when they eat and drink less. Although feeding tubes help supply nutrition to people when they can’t swallow properly, they are not usually helpful to people with Alzheimer disease.
See: The feeding, intravenous fluids and nutrition section in Lack of Appetite and Loss of Weight. 

When a person is no longer able to swallow food, fluids and medications, the focus shifts to ensuring the person’s comfort, such as providing regular mouth care. In the final days of life, fluids and medication are not usually given unless they are required for symptom management.
See: End of life care on the Alzheimer Society of Canada website.

As Alzheimer disease advances, a person’s mobility becomes very limited, and he or she may stay in bed most or all of the time. The person may not be able to move in bed, so regular assistance with repositioning and skin care is important. Decreased mobility and movement may lead to body stiffness, which may make the person uncomfortable. People with Alzheimer disease require ongoing pain assessment and care strategies to ensure their comfort.

Sometimes pain medication is required to relieve general body aches or because of other medical problems such as arthritis. Because people with end-stage Alzheimer disease lose their ability to communicate, non-verbal signs, body language, and changes in behaviour (such as increased agitation, anxiety, or sleep disturbances) become important signs of pain or discomfort.
 

Like other progressive illnesses that deplete energy reserves and strength, people with advancing Alzheimer disease eventually become bedridden. Without the strength to cough and clear their lungs of mucous and secretions, they are more likely to develop pneumonia.
See: When Death is Near to learn more about the changes that commonly occur in the final days and weeks of advanced illness.

If a person has no advance care plan, family members will have to decide on end-of-life care. Around-the-clock supervision of a person with end-stage Alzheimer disease is very difficult for family members to do on their own. Most people at this stage of the disease are cared for in a long-term care facility. However, if family members decide to have their loved one die at home, home care services can provide them with extra support. Whether a person is at home or in long-term care, the family will be faced with many decisions, such as will a transfer to acute hospital care take place to give intravenous antibiotics for an infection?

You may find helpful guidance from Romayne Gallagher, MD, in this video: Crucial conversations: Providing a roadmap for decision-making.

Many palliative care programs have an integrated approach to delivering care across settings. For example, the Calgary, Edmonton, Winnipeg and Fraser Health regions provide palliative care across settings - in the community, hospices, and in-patient palliative care units. This approach allows patients to transition from one setting to another, ensuring that they are cared for in the setting that best meets their needs.

Eligibility criteria common to many of palliative care programs include:

• The patient has a life-limiting illness with a prognosis of less than six months.
• The patient and their family have goals of care that align with the palliative care approach.
• The patient has agreed to a ‘do-not-attempt-resuscitation’ order.
  

Once accepted and registered with the palliative care program, a patient is typically assigned a palliative care coordinator. This experienced palliative care nurse coordinates community home care services, facilitates moves between care settings, and remains the key contact across care settings.

If the patient can live at home with support, a visiting home care nurse (with additional training in palliative care) will complete regular, holistic assessments. These assessments include evaluations of physical symptoms, functional level, and psychosocial and spiritual needs. The home care nurse works with the family physician, palliative care coordinator and other members of the palliative care team to plan care that best meets the patient’s needs.

When a patient doesn’t have the social supports or desire to be cared for at home, and doesn’t require acute medical care, a hospice setting may better meet his or her needs. A community hospice offers a slightly longer period of care giving, usually one to three months.

In-patient units typically provide more intensive care for shorter periods of time, which includes:

• Final days/hours of care for those imminently dying;
• Complex symptom management;
• Adjustment of medications;
• Palliative care emergencies such as pain crisis, spinal cord compression or bleeding;
• Complex psychosocial and spiritual issues;
• Relief of caregiver exhaustion; and
• Complex decision-making that community resources may not be able to address.
  

For additional information on palliative care delivery, listen to palliative care experts in The Gallery.

It’s normal for people to feel a range of emotions when they’re told their illness is progressing and death isn’t far. Commonly people say they feel numb, sad, helpless, disappointed, angry, or afraid. Family members often report similar reactions. There really are no specific words to alleviate the stress of the situation, but there’s a lot you can do to give your mom some comfort.

The best approach generally is to be attentive to your mom. Let her know you’re there to support her. Often people assume their support and intentions are obvious and they don’t need to say it out loud. Yet it can give someone a lot of comfort to hear words along these lines: "I love you and I care about you. I don’t like to see you going through this difficult situation. You’re not alone. I’m here for you whenever you need me".

Listening may be the single most helpful thing you can do. It shows your mom she’s important to you, that you’re attentive to her needs, and that you’re available to her. It’s okay to ask your mom what she wants to talk about, and what she doesn’t want to discuss. Consider asking what she thinks about her situation, and whether she’s afraid. There are some things you may want to avoid saying. For example, people often say, "I know what you’re going through". No doubt it’s said with the best intentions, but it implies that you’ve been through the same things and have felt the same things. This can be interpreted as minimizing the other person's experience, and may give the impression that you just don’t understand, so there’s no point in talking further. You may consider instead something along the lines of, "I don’t know how it feels to be in your situation, but I love you and I’m here to support you".

It’s very hard to watch someone cry or show distress. This may be one of the toughest parts of being with someone who is dying. It’s common to feel helpless, and really, there’s nothing you can say to fix the situation and stop the tears. If your mom cries, this is the time to show your love and support. Hug her and hold her. Let her know you’re there for her. Crying and feeling sadness are very normal in the face of an advanced illness. If your mom’s sadness becomes severe, it’s important to ask the healthcare team for help.

Some people find that illness shatters their sense of meaning and purpose. If your mother considers herself religious, she may wish to maintain or renew her connection with her faith community and its practices as a way to re-build the sense that life is meaningful. Other ways to find meaning include focusing on whatever is good in the present moment. A visit from a close friend, for example, may provide meaning even in the midst of a difficult day.

For many people, relationships are central to their understanding of meaning and purpose. You might want to affirm the meaning you find in your relationship with your mother by:

• reminiscing together;
• enjoying favourite activities, places, or rituals together;
• openly expressing your love, affection, and gratitude;
• working through treatment decisions and changes in roles and needs;
• letting go of old hurts and resentments;
• talking about the way the illness is changing family life or relationships.

Ask your mother if she has specific goals or things she’d like to do. People often find that finishing some task or resolving an old conflict can bring peace. Ask if there’s any way you can help her.

Your mother may also have some thoughts about what kind of legacy she’s leaving. It’s well known that people benefit from believing they’ve passed on something from their lives that may have meaning to others. You may ask your mom if she has stories she wants to pass on to someone, or if she wants to share some family history or advice with children or grandchildren. You may feel awkward starting such a conversation, but you could be pleasantly surprised at what you learn. If you’ve had such conversations throughout your lives, then this may be a chance to reminisce.

Throughout this time, remember that you too, need care and support. You can help your mom by taking good care of yourself. This includes taking time to do the things you enjoy. Obviously. you want to help your mom cope with her advanced illness, but you can’t do this if you get ill or overcome by exhaustion. Consider talking about your feelings and concerns with someone that you trust. Recognize and accept that you can’t meet all your mother’s needs by yourself. Accept help from people who want to be involved.

There may be resources available to you and your family that can support you. For example, there may be a palliative care program or hospice palliative care association in your region. Such organizations are leaders in end-of-life care. They can offer help and point you to resources available to patients and families.

Constipation is a very common symptom in patients with advanced disease of any kind, including cancer. Patients at the end of life have many reasons for becoming constipated, including immobility, reduced fluid intake, and the use of a number of medications. Patients frequently need to have bowel movements in inconvenient and unfamiliar places, and in unnatural (non-physiologic) positions. Medications, especially opioids, contribute to constipation. Other medication causes of constipation include tricyclic antidepressants and diuretics, as well as anti-serotonin anti-nauseants, such as ondansetron and granisetron.

Investigating constipation includes paying attention to history, noting typical symptoms, such as anorexia, nausea, vomiting, abdominal pain, bloating, tenesmus and diarrhea (leaking past the fecal obstruction), as well as conducting abdominal and rectal exams. X-rays of the abdomen may be helpful to rule out obstruction. Bloodwork may be needed to rule out hypercalcemia, the most common metabolic cause of constipation in cancer.

Anticipating and preventing constipation, and treating it before it becomes severe, is always preferred. Long-standing constipation is more difficult to manage. Assuming there is no underlying bowel obstruction, treatment includes correcting reversible metabolic abnormalities and identifying offending medications that could be reduced or changed. As much as possible, allow regular bowel movements to occur after meals, in natural (physiologic) positions, in private surroundings.

Bulk-forming laxatives (such as fibre supplements) should usually be discontinued, as they require more fluid intake than many palliative care patients are able to consume. As well, opioids frequently limit intraluminal moisture, which is required for bulk-forming agents to be effective. Docusate is frequently prescribed as stool softener, but there is little evidence that it is effective.

Starting with a stimulant laxative (such as senna), then adding an osmotic laxative (such as lactulose) if needed, has been an accepted approach. More recently, based on evidence, guidelines[1] suggest the use of polyethylene glycol (PEG) marketed as Lax-A-Day, Restoralax and others. PEG can be mixed in a favourite drink or sprinkled on food. PEG may cause less cramping than other laxatives.

If the rectum is full of stool, a low enema may be helpful to get things going. If the stool is hard and impacted, manual disimpaction with extra analgesia before the procedure may be required. Once constipation is resolved, the regular use of laxatives helps to prevent recurrence of this problem.

A special situation results when severe opioid-induced constipation does not respond to the usual agents described above. In this scenario, using subcutaneously injected methylnaltrexone may be helpful.

Reference

1. Librach L, et al. Consensus recommendations for the management of constipation in patients with advanced, progressive illness. J Pain Symptom Manage. 2010;40(5):761-773.

Other references

Fraser Health. Hospice Palliative Care Program Symptom Management Guidelines: Bowel Care. Surrey, BC; 2006.

Winnipeg Regional Health Authority Palliative Care Program. Constipation Assessment and Management Algorithm. Winnipeg, MB; 2012.

Woelk C. The hand that writes the opioid… Can Fam Phys. 2007;53:1015-1017.

Waiting can add stress to an already uncertain situation. Some people say that waiting for health and treatment information is one of the most stressful aspects of being ill. There’s the frustration of waiting, and for some people there’s also fear of what the test results may be. The waiting period can be equally difficult for family and friends. They have the added frustration of wanting to help, but not knowing what to say or do.

Some tests can take longer than others. Your husband’s physician will want results from all the tests before approaching your husband to discuss them and the possible treatment options. On top of that, the physician may have asked for further testing on some of the samples, or may have asked the opinion of another physician or health care provider in interpreting the test results.

For people who are waiting, even a little bit of information can help. Your husband could call his physician’s office and ask when the test results will be available, so you don’t have to wonder whether every phone call is the news he’s expecting. He may ask how he’ll find out the results: will he be contacted by a cancer specialist (oncologist) or his family physician? Will he get the details over the phone, or does he need to make an appointment? Clarifying these points may help.

There really are no specific words that will alleviate the stress of the situation, but there are things you can do to give your husband some comfort. The best approach generally is to be attentive to him, and let him know you’re there to support him. Often people assume their support is obvious and that they don’t need to say it out loud. Yet it can give a lot of comfort to hear words along these lines: "I love you and I care about you. I don’t like to see you going through this difficult situation. You’re not alone. I’m here for you whenever you need me."

Listening may be the single most helpful thing you can do. It shows your husband he’s important to you, that you’re attentive to his needs and that you’re available to him. It’s okay to ask him if there are particular things he wants to talk about, or if there are things he doesn’t want to discuss.