As many cancer patients have reported to researchers on this topic, pain control remains as important at the end of life, if not more so, as it was throughout the course of cancer treatment. Pain management is directly linked to quality of life issues. Think of pain control at the end of life as a doorway that must be opened for your quality of life (or that of your ill child or family member) to be optimal.

For some people, the health care team that has treated them during the course of their illness will also be able to treat them expertly at the end of life. For others, this will not prove to be the best choice. Some health care providers are experts primarily at treating a disease — and much less prepared and trained to manage end-of-life care. If your cancer health care team is not expert in end-of-life care, they may encourage you to work with other experts, such as those who provide hospice and palliative care. Ideally, your oncology care team will remain supportive of you throughout your days, whether or not they are managing your direct care at the end of life.

Sadly, some physicians and others caring for cancer patients may say, "There is nothing more that can be done for you." This can be extremely demoralizing, causing a person to feel hopeless and abandoned when the need for care and support is very great.

Don't believe it. While cure may not be possible, there is a great deal more that can and should be done in providing expert care and support, including pain relief. Pain management now must be handled by experts, people willing to work with you and your family to achieve comfort and satisfaction on your own terms. These are people who will think of your care in terms of what can be done, not what cannot. Your goals, your expectations, the tasks you want to accomplish before life ends — all these are essential parts of the assessment process for your health care providers at this time.

Hospice and palliative care providers, present in most communities, are excellent sources of pain management expertise and can offer help. You can locate hospice care near you by contacting the National Hospice and Palliative Care Organization, either by telephone at 1-800-658-8898, or look online at www.nhpco.org. The NHPCO website also has patient and family informational materials that provide in-depth information about hospice care.

For additional information on locating pain experts, see Understanding Pain: Finding Expert Care.

Pain Management Goals

The World Health Organization assessments note that pain relief can be provided, without heavy sedation, for 90-95 percent of people at the end of life. Organizations like the American Pain Society and the World Health Organization, among others, consider goals like these possible and reasonable:

• Pain should be controlled at all times, 24 hours a day, seven days a week.
  
  
• Patients should receive frequent pain and symptom assessment by pain management experts, and adjustments made to medications and how medications are delivered, as needed.
  
  
• Pain medications should be provided for continuous pain relief, with other medications immediately available to handle breakthrough pain.
  
  
• Patients and their caregivers should receive complete instructions on managing pain medications, if this responsibility is in their hands; and there should be immediate access to pain professionals if problems or questions arise. You should know who to call and how to reach help, at any hour, 24 hours a day.
  
  
• In general pain medications should be started with a relatively low dose and increased gradually, to minimize discomfort;
  
  
• Relief of pain should be sufficient in most cases to enable the patient to maintain the quality of life and ability to function he or she desires at the end of life;
  
  
• Any side effects from pain medication should be anticipated and caregivers should be prepared to pre-treat and manage these to keep the patient comfortable.

Assessing Pain

You will continue to play an important role in managing your pain, or that of your ill child or family member, because your health care team will count on you to inform them about pain in some detail. Be prepared to talk about

• The location(s) of the pain
• How long the pain lasts
• The severity of the pain. You'll probably be asked to indicate pain levels on a pain scale, for clarity.
• The duration of pain: does it come and go? Is it present all of the time?
• The effectiveness of pain medication, as can be assessed by evaluating the pain before medication is taken, and after.
• Are you experiencing "breakthrough" pain — meaning pain that occurs even when you are taking pain medication? Is this breakthrough pain connected with activities like walking, bathing, dressing?
• What makes the pain worse?
• What makes it better?
• What does the pain do to the quality of your life?

Your pain management provider will also want you to tell him or her about all medications you are currently taking, including over-the-counter medications, vitamins and herbal preparations, so appropriate pain medications for you can be chosen.

Medications

In general, pain experts will use the full array of pain medications available to treat the pain experienced by cancer patients at the end of life. For detailed information on pain medications, please see Treating Pain: Medications.

Routes. Pain experts recommend that medications be given in ways (routes) that are most convenient and comfortable for patients. This often means the use of oral medications when possible, and skin patches for longer-term administration of pain medications. Sometimes other routes, such as intravenous, subcutaneous (under the skin) or spinal, may be necessary as well. Pain experts should always work to ensure the greatest degree of patient comfort possible. In general, seek out long-acting pain medications rather than short-acting, to have longer-term relief and comfort.

Non-Medical Treatments

There are means other than medication that can help you manage pain. These techniques and others that help people with cancer gain a sense of control over pain during treatment will also work for people facing the end of life. Some useful techniques include:

• Heat
• Cold
• Relaxation therapy
• Imagery
• Distraction
• Electrical stimulations (TENS)
• Biofeedback
• Massage

For information on these techniques, see Treating Pain: Other Methods of Relieving Cancer Pain. Your health care team may have additional suggestions about effective non-medical approaches to easing your pain.

For Caregivers

Seeing a beloved family member or friend through a terminal illness is always difficult and stressful. As a caregiver, you face not only the loss of someone you love, but enormous responsibilities along the way.

In terms of helping to manage a loved one's pain, here are some ideas to make this responsibility a bit more manageable:

• If possible, have a conversation with the patient about his or her goals in pain management: what is wanted, what is not. This will help you both to be on the "same page" throughout these days. A teen and even a child can also have this discussion with you, and it is important to do this. If necessary, seek help from a child psychologist.
  
  
• Have an extended conversation with the patient's health care team about what the patient will need, is likely to experience, and so forth. If you need instructions in managing pain medication and other aspects of care, ask for this. Understanding what to do and when to do it will make you more comfortable with your responsibilities. If your loved one is in hospice care, the hospice staff will train you in caregiving at the end of life.
  
  
• Try to avoid allowing your prejudices about medications and other pain management techniques to color the care you provide. Put aside fears about your loved one becoming "addicted" to pain medicines, for example. People who need medications to manage pain are not addicts. Seek out reliable information and speak with professional pain experts about your concerns on these issues. This will help in your efforts to ensure your loved one's comfort.
  
  
• Make sure you understand your loved one's wishes for the end of life, especially in regard to the kind of care that is and is not wanted. If possible, make certain an advance directive detailing end-of-life wishes has been signed by the patient, and that this document's contents are known to all health care professionals caring for the patient. If you are a parent facing the death of a child, it is important to get help with this, too. Advance directives mean making very difficult choices about end-of-life treatment. Have your health care team explain these choices, and have a close supporter with you during this conversation.
  
  
• Be a close observer of your loved one's comfort levels. Is the pain medication working well, or are there signs that additional help is needed? Often caregivers are the first to notice indications of pain. Get an immediate consultation with your care team if you believe pain control is not optimal.
  
  
• Find ways to reduce your own stress. It will make you a better caregiver. Accept the help of others. Some ideas include obtaining relief from direct caregiving for a few hours every day or so, utilizing other family and friends. Failing this, consider employing a home health aid to allow you some time to yourself. Time away from responsibilities will refresh you.
  
  
• In some communities — a growing number — there are support groups for caregivers. Attend if possible. There is something invigorating and comforting about talking with others experiencing similar problems to the ones you face.

Questions for Your Doctor

1. My top priority is to have my pain managed well so I can continue to be alert and to enjoy life. Can you help with this?
   
   
2. If you are not able to provide me with the pain management I need, can you recommend a pain expert to help?
   
   
3. Sometimes my pain medicines have made me sleepy. Can you help manage my medications to avoid this?
   
   
4. I hate needles. Can we explore ways for me to take my pain medications without injections?
   
   
5. Sometimes my pain medication doesn't seem to work very well, particularly when I am moving around. Is there some way to manage pain that occurs at times like this?
   
   
6. I know some pain medications cause constipation in almost everyone. How can we manage this problem best?
   
   
7. I'm concerned that I will forget to take my pain medications on the right schedule. Are there some techniques that will help me remember?
   
   
8. My pain wakes me during the night. Is there a way to manage my pain so I can sleep better?
   
   
9. My pain medications upset my stomach. Is there a way to avoid this?
   
   
10. Is it time for me to consider hospice care? Can you explain how hospice service works? Will you refer me to hospice?
    
    
11. If I don't choose hospice, where else might I find expert pain management in a care setting?
    
    
12. I want to stay out of the hospital if possible, but my caregiver is exhausted and we need some additional help. What can you recommend?

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