Asked & Answered

Caring for teenagers who are dying can be quite challenging. Your teenage patient is at the point where he is trying to exert his independence and gain some freedom. However, as his disease progresses, he will become more and more dependent on others. With his general decline, his relationships with friends and his family will be affected, and his illness will have an impact on every aspect of his life.

Your patient may describe the hopes he has, and may focus on the future and what he wants to do. Although he likely understands his illness trajectory, he may talk about what he will do in the distant future. This is because he does not want to live in the shadow of his illness all the time. He wants to have as much normalcy in life as possible and not have people focus on his illness all the time. This may seem like a form of denial, but it is a very normal way for teens to continue to live their lives in the face of their disease and its progression. Therefore, it is important that you acknowledge your patient’s desire to embrace life.

Changes in physical appearance and ability are major aspects of illness that deeply affect teenagers. Physical changes can include hair and weight loss and decreased energy.These changes can significantly affect a teen’s body image and how he views himself in the world. As a result, your patient may withdraw. During these times, you should assess for signs and symptoms of depression. Teens are usually straightforward, so ask your patient direct questions about his symptoms and their effects on his life. Teens are usually willing to talk about these issues with health care providers whom they trust and have a relationship with.

In terms of emotions, be prepared for your patient to display a variety of reactions. Medications, such as dexamethasone, may have a significant impact on mood. Expressing anger and frustration at his situation would be quite normal.

Peers and friendships are extremely important to teenagers. So it will be vital to recognize how your patient’s illness has affected these relationships and encourage him to spend time with his friends. He may need someone to help organize or coordinate time with friends when he is feeling well enough for some activity. However, he may only be able to tolerate short visits if he is tired from treatments or is experiencing a general decline in his overall health. Encouraging him to maintain his social media connections (which is likely happening anyway) may be a good way for him to stay connected with friends when he is quite ill or has limited energy.

You should consider the impact of your patient’s illness on his friends and on his significant other, if he has one. Identify resources that could help his friends and their families if they lack experience with death and dying. Knowing your patient’s limitations and abilities and how these may continue to change is also important for friends. So you should discuss with your patient and his family about how to communicate information about his illness and decline. The parents of his friends may want to know what is happening so they can prepare their children for changes and the loss they will experience.

Your patient’s relationships with family members will change as his illness progresses―in particular, his relationship with his parents. As he becomes more dependent on them, they will need to manage his symptoms and medications, and eventually his basic care needs, such as personal hygiene. Losing the ability to function independently can be particularly distressing for teens and also for parents. As these losses accumulate, the reality of your patient’s illness will become difficult to ignore. It will affect the whole family, particularly his siblings, if he has any. His family will realize that trying to maintain a routine and a degree of normalcy may become more difficult as his disease progresses. A key role for the health care team will be preparing the family for further changes and helping them cope.

Discussing specific treatments and end-of-life decisions, such as a “do not attempt resuscitation” order, can be quite difficult with teenagers. A challenge for the health care team is determining when to have such discussions and whom to involve. When the focus of care has changed to a palliative approach, research shows that teens actually want to be more involved in their health care decisions.Your patient may not have wanted to participate in treatment decisions in the past, but he may wish to now. This may be because of the limited treatment decisions usually offered with oncology treatments when first diagnosed, as well as the overwhelming nature of an initial diagnosis. So it is crucial to focus on how he wants to be involved in decisions about what care he receives, where care is provided and how often follow-up and clinic appointments are scheduled.

Be flexible in order to maximize your patient’s time. Avoid setting up long appointments or making him wait in a clinic to see you. If he is trying to attend school, work around his class schedule and help him get to school as much as possible. A crucial role for the health care team will be helping his school cope with the progression of his illness and his death. Preparing school staff to deal with students under these circumstances will be an important consideration for the health care providers and school administration.

Palliative care at any age requires managing symptoms to ensure good quality of life. Teenagers can have significant symptoms, so make assessing and managing your patient’s symptoms a priority.

References

Coccia PF, Altman J, Bhatia S, Borinstein SC,et al. Adolescent and young adult oncology: clinical practice guidelines in oncology. JNCCN. 2012;10(9):1112-1150.

Freyer, DR. Care of the dying adolescent: special considerations. Pediatrics. 2004;113:381-388.

Freyer DR, Kuperberg A, Sterken DJ, Pastyrnak SL, Hudson D, Richards T. Multidisciplinary care of the dying adolescent. Child AdolescPsychiatrClin N Am. 2006;15:693-715.

Pritchard S, Cuvelier G, Harlos M, Barr R. Palliative care in adolescents and young adults with cancer. Cancer. 2011;117(10 Suppl):2323-2328.

There are a number of opioid equianalgesic tables with variations in recommended conversion ratios. However, there are several problems with such tables:

• They do not consider incomplete cross-tolerance. Conversion charts are usually derived from single-dose studies in opioid-naive patients with well-defined pain problems such as post-surgery or dental extraction. Such patients are not tolerant to opioids. When we change opioids in palliative patients, they have become tolerant to their current opioid. However, they won't be quite as tolerant to the new one that is being introduced; that is, the tolerance is not completely crossed over (incomplete cross-tolerance). For an opioid-naive patient, 10 mg morphine tends to be equivalent to about 2 mg hydromorphone. However, for the person who has become tolerant to 1000 mg morphine q4h, that tolerance will not be fully expressed with hydromorphone. Instead of tolerating 200 mg hydromorphone, the person may only tolerate 50 – 100 mg, or even much less.
• They do not take into consideration the individual differences in opioid effectiveness. There is increasing recognition of the importance of pharmacogenetic differences in opioid receptors and metabolism. However, it is not possible to predict and accommodate for this at the bedside.
• They can be particularly dangerous in situations of opioid-induced hyperalgesia (which can be seen as part of the spectrum of opioid-induced neurotoxicity). This is a unique situation of very high opioid tolerance and incomplete cross-tolerance, as described above. It is not as rare as might be thought, and is a scenario in which opioid rotation takes place. In such circumstances, it is felt that active opioid metabolites (morphine-3-glucuronide and hydromorphone-3-glucuronide) accumulate and cause generalized hyperalgesia as well as myoclonus and delirium. In response to the hyperalgesia, the opioid is often increased, which only escalates the problem. We have seen a patient have a morphine infusion increased from 5 mg/h to 700 mg/h over three days, in a futile effort to treat pain that the morphine itself was actually causing (through its metabolite). It is impossible to estimate the actual opioid needs in such patients when converting to an alternative, and if the equianalgesic tables are used, the patient is likely to be seriously harmed.
  

Recent publications[1,2,3,4,5] question the safety and role of conversion tables, with one stating that the use of dose conversion ratios found in equianalgesic tables may be an important contributor to the increasing incidence of opioid-related fatalities.[1]

The “new paradigm” described by Webster and Fine[2] involves opioid rotation without conversion tables. It is a slow process, and the assumption is that there is not a clinically urgent need to switch, as would be seen with opioid-induced neurotoxicity. Their process is as follows[2]:

1. Begin a downward titration of the original opioid by reducing the current dose by about 10 – 30% while beginning the new opioid at a dose that would normally be used in an opioid-naive patient or at the lowest available dose for the formulation.
2. Slowly reduce the dose of the original total daily opioid dose by about 10 – 25% per week while increasing the dose of the new daily opioid dose by about 10 – 20% based on clinical need and safety. In most instances, the complete switch can occur within three to four weeks.
3. Provide sufficient immediate-release opioid throughout the rotation to prevent withdrawal and/or increased pain if the dosing changes prove insufficient. This minimizes the risk of the patient self-medicating due to inadequate relief, which can be fatal.
   

A recent publication has examined the reliability of smart-phone apps for opioid conversion, and concluded that there are significant concerns with regard to the reliability of information provided by apps offering opioid dose conversion, with lack of information regarding evidence-based content and peer review in many cases. It is crucial that better regulation of medical apps is instigated in order to ensure that patient safety is maintained.[6]

So, with that background, here are some recommendations:

1. There are two main risks in opioid conversion: (1) you won't give enough and (2) you'll give too much. In addressing the possibility of under-dosing, aggressive breakthrough doses are your patient's friend. Similarly, patient/family education about what to watch for in case of excessive opioids is important. The correct breakthrough dose is quite simply the one that works and causes acceptable adverse effects (preferably none). Determining the proper breakthrough dose may require empirical titration (i.e., trial and error).
2. In all situations, be mindful of incomplete cross-tolerance. Consider decreasing the dose that you've calculated for the new opioid by about 50%. The longer the patient has been on opioids and the higher the dose (i.e., the more tolerant), the more important this is.
3. There may be times where you don't decrease your calculated conversion dose, but stay with a generous dose of the new opioid. For example, consider a patient who has recently started morphine at 10 mg q4h, and although pain is still poorly controlled, you want to switch to hydromorphone because of nausea. If you use a 1:5 conversion, the hydromorphone dose would be 2 mg q4h. We suggest not cutting that down for incomplete cross-tolerance, since the pain control is poor. This is a low-dose scenario in a patient who has not been on opioids long.
4. When switching opioids due to suspicions of opioid-induced neurotoxicity (hyperalgesia, myoclonus, delirium, usually in the context of renal insufficiency and rapidly escalating opioid dose), then determining opioid equivalences becomes even more imprecise. It may be that 90% of the current opioid dose is directed at treating pain that the opioid itself is causing. The management typically involves discontinuing the offending opioid, hydrating aggressively, and using prn doses of an alternate opioid until baseline opioid needs can be estimated.
5. For any conversion to the transdermal fentanyl patch, use the conversions recommended in the product monograph, such as this one: http://www.janssen.ca/product/114.
6. Consider using a 1:5 ratio between hydromorphone:morphine as a starting calculation, and then work from there with the above considerations in mind.
7. Webster and Fine[1,2,4] suggest that in the absence of a clinically urgent situation, it is likely safest to undertake a gradual conversion.
8. With methadone, you'll need advice of a palliative or pain management expert to review the unique considerations in each case.
   

References

1. Webster LR, Fine PG. Review and critique of opioid rotation practices and associated risks of toxicity. Pain Med. 2012;13:562-570.

2. Webster LR, Fine PG. Overdose deaths demand a new paradigm for opioid rotation. Pain Med. 2012;13:571-574.

3. Passik SD. Opioid rotation: what is the rush? Pain Med. 2012;13:487-488.

4. Webster LR, Fine PG. Review and critique of opioid rotation practices and associated risks of toxicity. Pain Med. 2012;13:562-570.

5. Shaheen PE, Walsh D, Lasheen W, et al. Opioid equianalgesic tables: are they all equally dangerous? J Pain Symptom Manage. 2009;38:409-417.

6. Haffey F, Brady RR, Maxwell S. A comparison of the reliability of smartphone apps for opioid conversion. Drug Saf. 2013;36:111-117.

People working in healthcare commonly find themselves providing care to someone they know. In some settings it may be possible to switch assignments. However, when the patient is known to staff, or the community is small, this won’t be an option. Depending on the relationship that former colleagues had with the patient, caring for her may have particular rewards or challenges.

First steps

As soon as it is practical, acknowledge with the patient the new dynamic in your relationship –that while you are a former colleague, you are now her caregiver and she is your patient. Assure her of your commitment to maintaining open, honest and confidential communication. Check in with her regularly: Are staff treating her differently? Are they avoiding her or, conversely, not respecting her space? Rather than making assumptions, take time to discuss her care needs and how well staff are meeting them. 

Boundaries and Privacy Issues

Privacy issues take on an added dimension. Your relationship is different now; her comfort in sharing information about herself and her situation, as well as her need for physical privacy, might also have changed.

Information acquired when the patient worked alongside you cannot be freely shared with and among team members. Nor can information that she now shares in a personal conversation. The difficulty comes when issues that may be relevant to her care (e.g. worries about family, finances, spiritual questions) come to light in the context of a personal discussion. Such information should be shared with members of the health care team only with her permission. If possible, clarify with her at the start of any conversation whether she is speaking with you as your patient or confiding in you as a friend.

Each province in Canada has its own regulations to protect Personal Health Information. Consult your regional websites regarding the privacy laws in your area. Your former colleague must be afforded the same protection of privacy as other patients.

Boundaries and Self-Care

At the professional level, care for a colleague at end of life should be similar to care provided to any patient. At the personal level, you need to find ways to acknowledge and work through your own feelings about your colleagues's illness and approaching death while continuing to offer care and support. You will also need to figure out what, if anything, you want to do to bring closure to your relationship. This might mean conversations about how you have appreciated her in the past and how you can be supportive in the present. It might mean reminiscing about shared experiences or even working through past misunderstandings.

To help the healthcare team work together and sustain each other, consider regular, voluntary de-briefs or team support meetings facilitated by a sensitive and skilled spiritual care provider or social worker. Such meetings can ensure a safe, supportive atmosphere to share feelings, identify difficulties, and work together in planning an approach to provide quality care.

A more informal approach is simply to check in with each other at regular reports, rounds or ‘huddles’. Huddles bring all staff members together in the middle of a shift for a brief check-in with each other. More serious specific concerns can be followed up by spiritual care, social work or the team manager. The reference list below includes two articles on how to approach a huddle. You may wish to create a binder of reading materials for the staffroom including these articles or any others from the reading list below.

See also:

• Crossing boundaries: Issues for hospice palliative care volunteers
• Dancing on the Edge: The Value of Maintaining Therapeutic Boundaries in Palliative Care
• End-of-Life Care & Supporting Staff: a literature review

References

Goldenhaer, L.M. et al. (2013). Huddling for high reliability and situation awareness. British Medical Journal, 22, p. 899-906.

Fogarty, C. T. and Schultz, S. (2010), Team huddles: the role of the primary care educator. The Clinical Teacher, 7: 157–160.

Salladay SA. When your patient is a coworker. Nursing. 2011 02; 41(2):12-12.

Clarke AI. Caring for colleagues. British Columbia Medical Journal. 2013;55(6):269.

Consalvo KE, Piscitelli LD, Williamson L, Policarpo GD, Englander M, Lyons K, et al. Treating one of our own. Clin.J.Oncol.Nurs. 2007 Apr;11(2):227-231.

Constantino J, Smart CJ. Death among us: grieving the loss of a coworker is a group process. Am.J.Nurs. 2004 06;104(6):64C.

Horn MO. The other side of the bed rail. Ann.Intern.Med. 1999;130(11):940-941.

Kanzler K, E., Goodie J, L., Hunter C, L., Glotfelter M, Ann, Bodart J, J. From colleague to patient: Ethical challenges in integrated primary care. Fam Syst Health. 2013 03;31(1):41-48.

Penson RT, Seiden MV, Chabner BA, Lynch Jr. TJ. Caring for colleagues. Oncologist. 2001;6(2):197-204. http://theoncologist.alphamedpress.org/content/6/2/197.full

Ufema J. Insights on death & dying. Professional friendship: losing a cherished colleague. Nursing. 2008 10;38(10):61-61

A life-limiting illness is one of life’s most stressful experiences imaginable. The person who is ill may feel nobody can really understand what he is going through even when friends or family are trying to support him. Family and friends may feel frustrated that their efforts to care are not more appreciated. Ultimately you cannot control how your friend approaches his dying. However, you can decide how you want to continue your friendship with him.

Living with serious illness usually brings intense thoughts and feelings that fluctuate from day to day, even moment to moment; the experience is often described as a “roller-coaster of emotions”. A life-limiting illness brings the loss of many things, for example: independence, capacity to enjoy familiar activities, and ability to carry out usual roles. Your friend may be experiencing grief for these losses, and this grief may include a deep sadness, a sense that life has become meaningless, and a desire to get it over with. Your friend is likely struggling in uncharted territory with how to live when so much has changed and death looms.

Witnessing the struggles of someone you care about can leave you feeling helpless and anxious, and you want to find a way to relieve the suffering. You just want your friend to enjoy his remaining life as much as possible and to be at peace. We encourage you to browse through these and other articles about emotional and spiritual health. They can help you to further understand your friend’s struggles and offer ways to respond to them:
Living with Limited Time: Exploring Feelings
Finding Meaning and Purpose During a Health Crisis

You and others close to your friend can be supportive by letting him know it is safe to be open about his struggles and to vent the thoughts and feelings that go with them. If he seems uninterested in your company, don’t take it personally. See it as an expression of the dark place he is in. Let him know he is important to you, and that his experiences during this period of life matter to you. Open up conversation about how life is changing for him and how your relationship is changing because of this.

Be real and honest in your conversations with him. Let him know how you feel when he talks about ending his life and what you imagine the impact of his suicide would be on you and others who love him. Talk to him about why he has been important to you in the past and about the ways he continues to be important to you. There is no script for such conversations. It is usually best just to say what is on your heart and mind, and to do what fits for you.

Ask him how you can share time during his illness in a meaningful way. Share your own ideas with him. Ask him what he needs from you as a friend. For example, would he like you to call him at a certain time each day to check in? Would he like you spend certain periods of time with him? Are there practical errands or chores you can help with? Is there some aspect of his care that you can help with? Take your cues from him. Give him a sense of what you can contribute to the companionship and support he wants and needs as he grows weaker. It is important to be realistic about what and how much you can commit to. Be honest with yourself and with him.

As a serious illness progresses, and health problems increase, a person often worries about what lies ahead. Your friend may wonder how he will cope with pain, increased weakness, or reliance on others. He also may question whether he can be cared for at home and where he will die. Ask him about his concerns and encourage him to discuss them with a member of his health care team. He may cope better if he has information about managing his symptoms, available support, and options for receiving care. You can also suggest contacting the local hospice palliative care program to explore how others in the community might help your friend. You may wish to gather information and explore sources of support for yourself. Learn more about services available in your area and how to get connected with this cross-Canada directory:
Programs and Services

If your friend continues to have thoughts about ending his life or talks about a plan for doing this, encourage him to seek professional help. It is important for him to have phone numbers he can call for help. These can include numbers for his local palliative care program, mental health program, local or provincial crisis line and his health care team. These resources can help you locate the nearest crisis support services:
Canadian Crisis Response Services list
The Canadian Association of Suicide Prevention

Pain and symptom management are central to end-of-life care. When a patient does not allow us to do all we can to control symptoms, it can be very unsettling. We may feel frustrated in witnessing suffering that seems unnecessary and have difficulty understanding why the patient is not willing to receive what we have to offer.

Often we use the terms “pain” and “suffering” in interchangeable ways. However, as Kabat-Zinn points out, there can be important differences between them. He writes that suffering “involves our thoughts and emotions and how they frame the meaning of our experiences.”[1] Cassel defines suffering as "the state of severe distress associated with events that threaten the intactness of the person."[2] This particular patient seems to endure more suffering from the emotional and spiritual pain related to her son’s salvation than from her physical pain. In fact, she has found a way to give meaning to her physical pain by believing that she may be able to use it to help her son. So, any attempt to help her manage her physical pain needs to be accompanied by attention to her emotional and spiritual pain about her son. It also must address her belief that her physical pain is a sacrifice that may benefit her son in death.

O’Rourke and Dufour discuss a very similar case about an elderly woman with congestive heart failure. She believed that “her physical pain would be the sacrifice that would help her [dead] son get to heaven.”[3] In this case study, the team’s actions proved to be helpful for the patient and her medical care. They focused on:

• talking with the patient about why it was so important for her to prevent the team from helping with her pain and shortness of breath;
• getting the patient’s permission to share the story behind her reluctance with the team and her family so they could work through it together;
• working with family members to find ways for them to assist the patient’s dead son get to heaven (e.g., through works of charity); and
• conversing with the chaplain about scripture stories that present God as loving and forgiving.
  

By supporting the patient’s beliefs and giving her opportunities to expand her understanding of her faith, the team was able to work through the patient’s resistance to pain medication.

References

1. Kabat-Zinn, J. Full Catastrophe Living: Using the Wisdom of Your Body and Mind to Face Stress, Pain, and Illness. New York, NY: Dell; 1990.

2. Cassell, EJ. The nature of suffering and the goals of medicine. N Engl J Med. 1982;306(11): 639-645.

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

The health care team, the patient and the family together need to consider several factors before making any change in medications. All these questions need to be answered:

What are the patient’s or family’s goals for care?

This may be the most important question. The goals must be realistic and achievable. For example, it may not be realistic to give medications to increase appetite when the patient isn’t hungry and eating won’t change the course of the illness.

What is the patient’s condition?

For example, often oral medications are stopped if the patient has trouble swallowing or is no longer alert.

What is the benefit of the medication?

In late stages of an illness, when maintaining comfort is a goal, it’s common to stop any medications that are not essential for comfort.

What will the patient feel if the medication is stopped or decreased?

If the person is still feeling pain, then medications that relieve pain are still helpful. If the person can’t swallow, then medications can be administered some other way.

There usually comes a time when medications that are not directly needed for comfort are discontinued. This happens when a person is no longer able to swallow or becomes unconscious. At this point discussions with the health care team will include which medications to continue and how those medications will be administered. Often medications to treat symptoms such as pain can be administered in other ways.

We suggest that you start by reading Talking with Children and Youth About Serious Illness, in the Topics section of our website. This article, written by our clinical team, will give you basic information on how to reach out to teenagers who have someone close to them who is ill and dying. Our Books, Links, and More section lists a number of resources specifically aimed at teenagers, and also includes a list of resources for adults supporting teenagers.

Here are some resources that others have found helpful.

Online resources:

• Hospice Calgary‘s website features articles about teenagers’ responses to illness and loss.
• Nanaimo Community Hospice Society’s Teens and Death website is tailored specifically to youth 13 to 19 years of age. Teens and adults can also read online brochures and handbooks, such as Supporting Teens in Grief, You Count and Your Feelings Matter, and Teens and Grief, on the Society’s webpage Grief Support for Youth between the Ages of 13-19 Years.
• BC Children’s Hospital has created an extensive series of pamphlets for those supporting teenagers, such as Talking about viewing a body..., Talking about cremation..., and When your parent may be facing death...
• Max and Beatrice Wolfe Children's Centre in Toronto provides online resources to help you support children and youth who have someone close to them who is dying or has died.
• When Your Parent Has Cancer: A Guide for Teens by the National Cancer Institute (US) is an online booklet that addresses a range of topics, such as understanding cancer and how to help your parent. It is available in English and Spanish.

Phone resource:

• Kids Help Phone is a toll-free, 24-hour French and English service that offers anonymous phone counselling, referral and Internet services for children and teens.

Books:

• Living Dying: A Guide for Adults Supporting Grieving Children and Teenagers, by Canadian author Ceilidh Eaton Russell, is a practical handbook for parents and professionals supporting youth who have experienced the death of a loved one, or have a loved one who is dying.
• Healing a Teen’s Grieving Heart: 100 Practical Ideas for Families, Friends and Caregivers, by Alan D. Wolfelt, is for adults who want practical, day-to-day "how-tos" for helping a grieving teen. It reviews the unique mourning styles and needs of teenagers, and provides simple activities and tips for relating to a grieving teen.

Swelling reflects the burden of illness on a person’s body. As the illness progresses, the burden increases further, and swelling may increase as well. If the swelling is the result of fluid collecting in the abdomen, it likely can be drained by paracentesis. As the rate of accumulation increases, paracentesis may be more frequent. At late stages of the illness, paracentesis may no longer be a benefit. Like many treatments, paracentesis may present its own burden on the body.

While swelling can reflect an increasing burden of illness, the following are signs that more reliably indicate that the end of life is approaching:

• decline in energy and range of activity, from regular movement to being bedridden;
• loss of appetite and thirst and a resulting loss in weight;
• breathing becoming more irregular, and very close to death sometimes noisier;
• changes in mental state, including confusion, restlessness, withdrawal or unconsciousness.

Multiple sclerosis (MS) is a progressive disease of the nervous system. It can cause a wide variety of symptoms, which may continue or worsen as the disease progresses. The most common symptoms include fatigue, walking difficulties, bowel and bladder disturbances, vision problems, changes in brain function, changes in sexual function, pain and depression or mood swings.

With diseases such as MS, for which there currently is no cure, palliative care expertise can help in all stages of the illness. A palliative approach offers help with symptoms, and help in anticipating and planning for issues and decisions that are likely to come up as the disease progresses. This ensures that a person’s wishes will be met at any stage of the disease. At the end-stage of MS, people commonly face some particular challenges.

Care setting

The choice of where to care for someone with advanced MS depends on each person's needs and available resources. Options may include home, hospice, personal care or nursing home, palliative care unit, or hospital. Where there are community-based resources, then care at home is often preferred by most patients and families. At times, the support needed may require care in a long-term facility. In such settings the person with MS may be far younger than other residents and have greater mental capacities. This can challenge the facility’s program resources, and can affect a person’s quality of life. A palliative care facility or hospice may be preferable at the end of life, if the person meets the criteria for these resources.

Swallowing and eating

Swallowing problems are uncommon in the early stages of MS, but in late stages, as many as one third of people with MS have trouble swallowing. They also may have eating difficulties as a result of hand tremors and muscle spasms. Some people in the late stages of MS show signs of declining mental processes. As a result, they may be unaware of the act of eating or of the need to swallow when being fed. It’s helpful for caregivers, patients and health care providers to talk about how food and fluids will be provided in the advanced stages of illness.

Communication

Speech difficulties may require assessment by a speech-language pathologist (SLP). An SLP also can suggest ways to handle feeding and swallowing problems.

Pain

People with advanced MS may have pain caused by muscle spasms, neuropathic (nerve) pain, and pain caused by immobility. Neuropathic pain and pain from spasms can be challenging to treat. Medications for neuropathic pain include anticonvulsants and antidepressants. If tricyclic antidepressants are used, be aware that urinary retention can be a side effect. Cannabinoids may help relieve neuropathic pain related to MS. Muscle spasms are often treated with muscle relaxants. Physiotherapy to improve range of motion may help with muscle spasms and spasticity.

Final stages

Someone diagnosed with MS often is stable for long periods, can decline, and then stabilize again. Ultimately, the person dies from complications related to the advancing disease. In many diseases of the nervous system deteriorating respiratory function usually brings on the final decline. This may be related to shallow and inefficient breathing, which can lead to complications such as pneumonia. Shortness of breath and respiratory secretions often need to be controlled. Pain medications and sometimes sedatives may help people who are short of breath. Oxygen may be used if it’s available. Medications may help decrease secretions if this becomes a source of discomfort or distress. Certain symptoms may limit the methods available to administer medications. One option is through a feeding tube, if a tube is already in place. Another option is sublingual administration, if swallowing ability and secretions allow it. Subcutaneous administration of medications can also be considered.

Learning to live without your husband, and adapting to a very different life without him is a demanding experience. This period is the most difficult, especially if your loss was sudden or unexpected, and if you didn’t have a proper chance to say goodbye. It’s part of the grieving process to feel immense sadness and miss the person who died.

Each person grieves in his or her own way. Often it can be overwhelming and isolating. Many people go through a time of numbness, often described as walking through a fog. Some people have vivid dreams or daydreams that their loved one will walk through the door as if still alive. Some people try to avoid the pain by keeping busy. While others wait for the pain to subside on its own, but it often resurfaces without warning. It may be especially overwhelming on anniversaries or holidays, with special songs, in shared places, or with specific people or memories.

Generally, people need to confront the pain and the loss, in order to work through the grieving process. Some people find writing regularly in a journal can help work out the pain. You may find comfort in writing a letter to your husband, or in finding some other way to say goodbye.

Grieving can be very difficult to do alone. Talking with trusted people can help. Trusted friends or family members can be much needed supports, and can help break down a sense of isolation. It may help to see a counselor to talk about your experiences and feelings. Think about joining a grief support group. There may be value in hearing how others are dealing with similar loss, and in knowing that others too are feeling pain and grief. If your area has a hospice or palliative care association you may want to contact them. Often, they run bereavement programs, or they can refer you to such a program.

Grieving takes time. Some people say that grieving the death of an important person never ends; it just changes. As time goes on you’ll continue to think about your husband, or feel his presence, but your emotions won’t be as overwhelming as they are right now.

Sometimes grief is especially complex and hard to work through. It often happens when there are several deaths close together or when the person who died was central in your life, as your husband was. Such situations may lead to depression. Feeling isolated or overwhelmed can increase that risk. It’s important to be aware of this. Symptoms of depression can be similar to symptoms of grief. Notice especially if you can’t eat or sleep or you can’t get interested in things that used to give you pleasure. Depression is serious because it engulfs every aspect of our lives and distorts the way we feel about the world and ourselves. Often it can’t be resolved alone. If you’re concerned about your emotions, it’s important to talk to a healthcare provider who can help you find support, resources, or treatment if necessary.

Estimating how long someone may live is very difficult. It’s usually discussed in terms of ranges; that is, hours to days, days to weeks, or weeks to months. It’s important to realize that every situation is different, that many factors are involved, and that everyone responds differently.

Fluid intake has the biggest effect on immediate survival. Our bodies tend to have several weeks worth of reserve energy from food stores, but lack of fluid causes problems with kidney function within a few days. When someone is no longer taking in any fluid, and if he or she is bedridden (and so needs little fluid) then this person may live as little as a few days or as long as a couple of weeks.

In the normal dying process people lose their sense of hunger or thirst. In addition, they may not be alert enough to swallow safely. This is a sign that body systems are starting to shut down. Death may be days or hours away. The patient may feel more comfortable if the mouth is moistened, but this is to relieve a dry mouth, not to satisfy thirst.

When a decision is made to discontinue life-sustaining treatments such as artificial feeding or intravenous fluids, then a patient’s remaining time depends on how sick he or she is at that point, and whether there are complications such as pneumonia. Commonly, even after intravenous fluids are stopped the patient may take sips of fluids, ice chips, or swabs to moisten the mouth. This may provide more fluid than people realize, and it may extend survival time. All these unique health factors affect how someone experiences the total burden of the illness and how long she or he will live. Some people believe that a person's will to live also affects a person's burden of illness and so may also affect life expectancy.

Families and health care providers may be uncomfortable when someone refuses artificial food and fluids, as this seems like basic nurturing. Yet, legally and ethically artificial nutrition and hydration is considered health care treatment, just like surgery, dialysis or other medical interventions. People have the right to decline medical treatments, and others must respect this decision.

There is no way to predict when someone’s condition may change suddenly. Therefore, it’s important to address any issues that need attention before the patient becomes too weak to do so. Things that need to be done or said should happen sooner rather than later.

Each of us has reserves of energy that we use every day. Healthy people can replenish their energy stores. People with progressive illnesses use their energy stores to get through each day, but their illness prevents them from being able to top up their reserves. So they’re constantly spending their "energy savings." A big challenge is that there’s no way of knowing what the "account balance" of reserve energy is; there’s no way to measure it directly.

As illness progresses, a sign of diminishing energy reserves is seen in decreased physical abilities, particularly in the person's range of activities. Physical tasks become increasingly challenging, and gradually daily activities become limited. When the illness is far advanced, it’s common that someone is in bed all day. This is a normal part of what happens to someone who has a terminal illness.

The "energy savings account" not only helps people get through the day, it has another very important role. These reserves are what we draw from when an unexpected complication occurs, such as the flu or pneumonia. When someone doesn’t have enough energy reserves she can deteriorate suddenly, sometimes to the point of struggling to survive. Such times are uncertain and frightening, and must be taken day by day or even hour by hour.

It’s hard to estimate how long someone may have to live. It may help to use a guideline called the momentum of change. Significant changes in someone’s condition from month to month may indicate that a person may have a few months to live. The same changes over weeks may be a sign that there are only weeks left. Similarly, changes from day to day or hour to hour may mean days or hours of life left.

When a person's burden of illness reaches the point that physical activity is restricted, it indicates that the level of reserve energy is very limited. Your sister’s condition may stay the same for long periods, but it’s possible that a sudden complication leads to a rapid decline. It helps to recognize this and prepare for the unexpected.

You can help your sister by talking with her about how she wants to spend her limited amount of energy. This may mean taking a nap in the afternoon so she can enjoy the evening with family. It also may help to modify her living space so that she can limit the actions that tire her, such as climbing stairs. If visitors are tiring your sister quickly, it may help to limit the number of visitors or ask them to limit the length of their visits.

It may mean a lot to your sister if you ask her whether she has any goal or task she may want to accomplish, and then to help her do it before she’s too weak, or in case something unexpected happens. This also is the time to accomplish any of your own goals that involve your sister.

The nature and format of bereavement debriefing sessions will vary depending on who is involved, the purpose of the session, the event that precipitated it, and whether the session is a regularly scheduled review. Essential for an effective session is staff support. Be sure to involve people who can help create a safe environment in which staff can ask questions, exchange information, and share thoughts and feelings triggered by a death.

Patient death reviews

Some palliative care units hold regularly scheduled meetings to review deaths that occur over a period of time (e.g., weekly or monthly). Death reviews have four main purposes:

1. To find out what happened

The nurse caring for the patient voice-records a summary of events leading up to the death, the actual moment of death, and the time after the death. She or he focuses not only on the condition of the patient, such as the patient’s symptoms and their management, but also on how the family coped. Staff then gather to review each death. They listen to the voice recording and discuss the case.

The recordings vary: some are like factual reports; others are moving descriptions of the scene at the time of death. Recording a summary is important for a number of reasons. It’s an opportunity for the nurse to debrief and experience some catharsis, and it gives staff who were not present an opportunity to hear what actually happened. Team members make an investment in a patient’s care, but they often don't witness the end of life. By listening to a summary of events, they can learn about what happened and have closure.

2. To evaluate the care provided

The recorded summary also helps the team evaluate the care provided and to learn from each event. Evaluation may involve questions such as the following:

• What can we learn from this event?
• Was there anything we could have done differently?
• Were there things that we did well?
  

Affirming what the team did well, learning from mistakes or challenging staff to continue to grow are all important aspects of evaluating care.

3. To identify the bereavement needs of the family

During a patient’s care, various team members will have had an opportunity to learn something about family members. Research has provided considerable information about the risk factors associated with bereavement. During this stage of the review, team members identify the family members who may benefit from ongoing contact.

4. To explore the impact on staff

The review is an opportunity to reflect on how staff were affected by the death of a patient. Not every death has a major impact, but there are times when a patient’s death significantly impacts individual staff members and perhaps the team as a whole. In these situations, everyone can benefit by processing the event individually or together. By sharing reactions, staff can learn from each other and use their collective experiences to help put their own feelings and responses in context. Staff require a very trusting, non-judgmental environment to share openly, gain mutual support and learn from each other.

Multiple death reviews

Some palliative care units conduct reflections on multiple patient deaths, which serve the same purpose as patient death reviews but have a different format.

These sessions begin with one person reading the names of patients who have died since the last review. Staff may collect the obituaries of these people and have them available for other staff to read. A team member (who could be a chaplain, but doesn’t have to be) reads a poem or briefly reflects on living and dying, caring and compassion, joy and sorrow, trust and hope, or love and suffering. Then the team responds to questions, such as the following, to encourage open-ended sharing:

• Which of the deaths do you feel best about? (This gives staff an opportunity to affirm themselves and each other, and to share their own thoughts about what makes for a good death.)
• Which of the deaths do you feel least good about? (This gives staff an opportunity to discuss difficult patient situations and/or problems in the delivery of optimal care. Some people may also share how a particular death touched their own grief history or life situation.)
• What changes would you make in the way the team or program cares for patients on the basis of these experiences? (Staff should be given a fair bit of freedom to brainstorm how improvements could be made or sustained. If the patient care manager is present, it’s important for her or him to assume a listening role and be open to considering staff’s suggestions. If the manager is not present, a volunteer could share staff concerns and suggestions with her or him later.)
• How do you cope with the grief that accumulates in working with the dying? Do you need more from the team? (This gives new staff, in particular, the opportunity to ask team members what they do or find helpful to cope with grief.)
  

Reflections on patient deaths often end with a brief affirmation of staff’s goal to provide competent and compassionate care. Bereavement debriefing sessions are an important part of self-reflective practice and self-care.

Reference

Keene EA, Hutton N, Hall B, Rushton C. Bereavement debriefing sessions: an intervention to support health care professionals in managing their grief after the death of a patient. Pediatr Nurs. 2010;36(4):185–9.

“One of the most difficult times for anyone is when a loved one is dying or at risk of death. The demands of caring for a gravely ill family member can jeopardize both your job and the financial security of your family. The Government of Canada believes that, during such times, you should not have to choose between keeping your job and caring for your family.

Compassionate care benefits are Employment Insurance (EI) benefits paid to people who have to be away from work temporarily to provide care or support to a family member who is gravely ill and who has a significant risk of death within 26 weeks (six months). A maximum of 26 weeks of compassionate care benefits may be paid to eligible people.”

For further information and specific details on the Compassionate Care Benefits program, please access the Government of Canada Employment Insurance website.

Depending on the patient’s needs, home care services may be set up to help care for the patient at home. Home care is part of the health care system. Many regions in Canada have home care teams and may include health care providers trained in palliative care and symptom management. Funding for individual hospice or palliative care programs varies, so it’s important to contact the programs in your area to learn what services they provide.

Some provinces or territories cover medication costs if patients are registered in a palliative care program. These often have eligibility criteria.

Leukemia is different from many cancers, as there is no tumor. Rather, the cancerous cells are found throughout the body, in the blood or in bone marrow. Leukemia interferes with the normal production of red cells, white cells, and platelets in the bone marrow. The medications used to treat this disease may also injure the healthy stem cells that produce white blood cells, red blood cells and platelets. It’s common for patients with leukemia to develop anemia (low levels of red cells) and thrombocytopenia (low levels of platelets), and in some cases, leukopenia (low levels of white cells). Red cells and platelets may be replaced by healthy donated cells in the form of blood transfusions. Most patients with leukemia require some transfusions during their care.

Platelet transfusions are common in leukemia, but not everyone needs them. Usually blood can still clot even if the platelet count is low, as long as the platelets are functional. Platelet transfusions are sometimes given if the number gets low or if the person is having distressing symptoms, such as nosebleeds or bleeding gums. If there is no distressing bleeding and the disease is in the final stages, then platelet transfusions may never be necessary.

Red cell transfusions are used to treat low hemoglobin (red cell) counts. When considering the need for a red cell transfusion blood count results are important, but often the focus is on how the person feels. For example, a person can be conscious and able to communicate with a hemoglobin count in the 40s, which is quite low. This is more likely if the decrease in hemoglobin has been gradual and the person has become accustomed to low levels. When hemoglobin is this low, people commonly feel profound fatigue, confusion and short of breath. With good palliative care these symptoms are manageable.

As leukemia progresses, the frequency of transfusions may increase to two or three times a week. Requiring transfusions more frequently is usually considered a milestone. More frequent transfusions usually are not helpful and the patient is likely to live only a few more days, or a very few weeks at most.

When transfusions are needed several times a week, the disease has progressed to the point where other symptoms may diminish quality of life. At this point the immune system is extremely weak and infections are a real threat. Infections can be treated with antibiotics, but without a functioning immune system, they can’t be overcome completely. Also at this point people are very weak overall, have little energy, and so spend most of their time in bed. This does not mean, however, that they can’t still find some quality in their life.

Someone who has leukemia may die from different things. There may be a sudden loss of blood or a stroke, because of the inability of the blood to clot. There may be complications from low hemoglobin levels. Infection is possible. Pneumonia is a common complication because people are at risk of aspiration. Sometimes death comes from a combination of things. Sometimes someone just gradually gets weaker and body systems shut down.

People with leukemia often come to think of transfusions as a lifeline, because it’s the only thing that stands in the way of death. It’s often difficult for people and their families to let go of that lifeline as death approaches. Yet there comes a time when the lifeline no longer works. With good palliative care, the symptoms that may develop at the end of life can be well controlled to keep the person comfortable.

We suggest that you start by reading Talking with Children and Youth About Serious Illness, in the Topics section of our website. This article, written by our clinical team, will give you basic information on how to reach out to children who have someone close to them who is ill or dying. Our Books, Links, and More section lists a number of resources specifically aimed at children, and also includes a list of resources for adults supporting children.

Here are some resources that others have found helpful.

Online resources:

• The BC Cancer Agency’s Cancer in My Family - My Anything But Ordinary Journey website offers a creative tool to help children explore their feelings about a family member who is ill. This resource also helps parents support their children as they work through their questions and emotions about a family member’s cancer, and gain understanding about the disease.
• Hospice Calgary‘s website features articles about children’s responses to illness and loss.
• Nanaimo Community Hospice Society’s webpage Grief Support for Children offers online, child-centred grief brochures and handbooks, such as Children and Grief and In the Schools.
• BC Children’s Hospital has created an extensive series of pamphlets tailored for those supporting toddlers and school-age children on a wide range of topics such as Talking about Death and Talking about Funerals and Memorials
• Max and Beatrice Wolfe Children's Centre in Toronto provides online resources to help you support children and youth who have someone close to them who is dying or has died.

Phone resource:

• Kids Help Phone is a toll-free, 24-hour French and English service that offers anonymous phone counselling, referral and Internet services for children and teens.

Books:

• A Child’s View of Grief: A Guide for Parents, Teachers, and Counselors, by Alan D. Wolfelt, explains how children and adolescents grieve after a loved one dies and offers helpful guidelines for adults.
• Grief in Children: A Handbook for Adults , by Atle Dyregov, helps adults to understand how children grieve and provides adults with ideas on how to best help them.
  
  

It can be very hard to watch someone suffer. Physical, emotional and spiritual suffering are intertwined, and they affect each other. All aspects of suffering need to be acknowledged and addressed.

Your mom’s pain is likely a major factor in the distress she’s feeling. It may be this pain that’s making her say she wants to die. Pain can be so overwhelming that it can overshadow everything else in a person’s life. If the pain is treated and eased then she can begin to focus again on other things.

You may have to advocate for your mom with the health team. Be her voice, as she’s finding it hard to deal with things. You can ask to have her pain assessed and controlled, so she can find some relief and improve the quality of her life. Discuss your concerns with your mother's health care team. Some health care providers specialize in pain management or palliative care, and can make suggestions that may help ease her pain. Controlling the pain will not suddenly make everything better, but it may help her focus on other aspects of her situation, such as her emotions.

People who are dying are deeply affected by their decreasing ability to care for themselves. It can lead them to rethink their own sense of who they are, and make them feel numb, sad, helpless, disappointed or angry. All these reactions are normal, and family members sometimes report similar feelings. Your mom may be experiencing depression. Her health care team needs to assess her to see if she is showing symptoms of depression and can offer treatment if needed.

There are no specific words that will alleviate your mom’s distress. Yet there’s much you can do to give her comfort. Sometimes it’s just by being physically present.

You likely can make the biggest difference by being attentive and listening to your mom. This tells her many things: that you’re there to support her, that you’re attuned to her needs; and that you’re available for her. It may help to tell your mom that you’re there to support her. Sometimes people don’t say it out loud. They assume their support and intentions are obvious, but it’s important to put it into words. Your mom may get comfort from hearing words like this: "I love you and I care about you. I don’t like to see you going through this. I want you to know that you’re not alone, and I am here for you whenever you need me." This also leaves the conversation open and lets your mom talk about the emotional and spiritual issues she may be struggling with. Your mom may find it hard to talk about such things with family, and you may want to call on a member of the health care team, such a social worker or spiritual care provider. If you mom has had her own connection with a spiritual leader in the past, it may be helpful to involve this person in her care.

Difficulty breathing is also called shortness of breath or dyspnea. It’s a common symptom in many diseases, especially in advanced stages. Many people describe it as feeling "hungry for air."

Opioid medications are commonly used to help control shortness of breath. In advanced stages of an illness, the treatment approach is similar to that for pain. That is, the goal is to have a constant level of medication in the body, to prevent dyspnea from occurring, rather than to wait for it to appear then treat it and wait for relief. This approach requires regular, around-the-clock doses of an opioid.

The regularly scheduled medication may do a good job controlling the shortness of breath, but the health care team can prescribe what’s called a breakthrough dose or rescue dose in case the dyspnea occasionally flares up or “breaks through” the level of regular control. It’s a good idea to keep track of how many breakthrough doses are used and when. This gives the health care team a sense of how the patient is doing, and whether the regular dosage is effective. If there are many flare-ups, the regular dosage may need to be increased.

Dyspnea can cause anxiety or increase existing anxiety. In this case, medications for anxiety may be given. Other medications may be used to treat other causes of dyspnea. For example, an antibiotic may be given in the hopes of treating a pneumonia.

This is not a straightforward issue, as the evidence supporting one opioid over another is often based on the experience and advice of experts rather than on solid data from prospective, randomized, double-blind trials.

Both morphine and hydromorphone (Dilaudid) have active metabolites that are known to accumulate in the context of renal insufficiency. Morphine-6-glucuronide and morphine-3-glucuronide are derived from morphine, and hydromorphone-3-glucuronide from hydromorphone. These active metabolites are renally excreted. The 3-glucuronide metabolites have been implicated in the development of opioid-induced neurotoxicity (OIN), and have been described as "anti-analgesic." They may result in a syndrome of hyperalgesia, delirium, myoclonus, and ultimately seizures and death.

One of the early indications of OIN is an escalation of pain that takes on a more widespread and diffuse nature than previously, and which worsens in spite of rapid escalation of opioid doses. In fact, the pain is escalating as a result of the increasing opioid doses, rather than in spite of the increases. There is often an accompanying agitated delirium, where restlessness and calling out are misinterpreted as pain, resulting in further increases of the opioid that is actually causing the problem.

Between morphine and hydromorphone, hydromorphone is generally preferred in renal insufficiency. Despite the lack of literature to support this, problems related to hydromorphone’s 3-glucuronide metabolite seem to appear more slowly than with morphine. However, OIN will still develop over days or weeks due to metabolite accumulation.

Fentanyl and methadone have no known active metabolites, and are preferred opioids in renal insufficiency. However, there are case reports of opioid-induced neurotoxicity even with these drugs, although it is uncommon.

Reference

King S, Forbes K, Hanks GW, Ferro CJ, Chambers EJ. A systematic review of the use of opioid medication for those with moderate to severe cancer pain and renal impairment: a European palliative care research collaborative opioid guideline project. Palliat Med. 2011;25(5):525-552.

It’s sometimes hard to know why people respond the way they do to their illness. There could be a lot going on inside your friend that can’t be seen on the outside.

He may not seem to be declining rapidly, but may feel inside that things are changing. These changes can include pain, fatigue or lack of appetite, which aren’t necessarily visible to others. He may have a sense that something is going to happen, and that there isn’t a lot of time left. This sense may be prompted by feelings, symptoms or the urge to discuss difficult issues while there’s still a chance.

He may be doing well, considering the diagnosis, but something can happen suddenly to change is situation. This could include an infection, blood clot in the lungs, problems with organs such as the kidneys, or other complication. He may choose not to treat the setback, knowing full well that it’s likely to speed up his decline.

Perhaps your friend has had information from the health care team that leads him to realize that there isn’t much time left. He may not want to share the details, so he talks of dying as a way to help prepare you for the change he’s expecting.

You may want to ask your friend why he thinks he’s nearing the end. He may be willing to tell you his reasons. Even if he’s not, it doesn’t hurt to ask. This lets him know what you’re seeing, and that it doesn’t seem to match what he’s saying. When someone has a terminal illness, it’s reasonable to be prepared for the worst, even while hoping for the best.

There’s a guideline used in palliative care, called the momentum of change, which can give a sense of how an illness is progressing. When someone shows changes from one month to the next, the person likely has months of life left. When changes happen from week to week, there are usually weeks left in life. When changes occur daily, there are usually days of life left. When there are hourly changes, there are usually hours of life left. This is a general guide only; there’s always the possibility of unexpected changes in a person’s health.