Understanding the Dying Process
Introduction to Pain Management:
Everyone’s pain is different. That means the right treatment for your loved one is going to be unique to them. What seems like a lot of medication for one patient or one condition can be too little for another person or even the same person with a different pain. Pain can also change over time. What worked last week may not work this week.
Pain is very complicated, and a “one size fits all” may not exist. However, there are steps you can take to help your loved ones manage their pain. At the very least, it is very important that you, your loved one, and the doctor all work as a team. The doctor will work with your loved one to get them on the right medication at the right dose, but it may take some time to get it just right. There are some very important things you can do as part of the team to help get your loved one receive the best possible pain relief as quickly as possible.
Step 1 - Be proactive about communication
If possible, be present when your loved one discusses their pain management plan with their care team. It’s not always possible, but going with loved ones to doctors’ appointments is helpful. You become a source of moral support and a friendly presence in a time of stress.
It is also important that everyone is on the same page with the pain management plan. If you can’t be there when your loved one talks to their provider about the pain treatment plan, talk to your loved one as soon as possible after the pain management plan is in place. It’s easy to forget plans, and the sooner you start that conversation with your loved ones, the less likely they are to forget details.
Suggested information to gather to help your provider treat your loved one’s pain:
- Where is the pain located?
- Can your loved one describe the pain?
- Is it throbbing, stabbing, dull, cramping, burning, tingling, sharp, etc?
- What triggers the pain? What makes the pain better or worse (movement, positioning, rest, etc)?
- How often does the pain occur? Is it constant or occasional?
- How severe is the pain when it occurs?
- How severe is it at it’s best and at it’s worst?
- Can your loved one rate it? If not - does the pain cause your loved one to grimace, moan, tense-up?
- What treatments (medications, heat/ice, etc.) have been tried?
- What has worked and what hasn’t worked?
- What medications are being used to manage the pain (including over the counter and supplements)?
- How much medicine is needed to control the pain and how often is it needed? Does the medication relieve pain after an hour after it is given? Does the pain medication work initially but wear off before the next dose
Step 2 - Communication doesn’t end with the appointment.
If there are any problems with the plan - e.g. you can’t get the medication filled, your loved one is having side effects or the medication is not working. It’s very important your doctor knows if there are problems.
If there are new symptoms or changes in how the medication works, like a dose that used to work no longer does, or your loved one is having to take more medicine to be comfortable, communicate those things to the doctor right away. That way, the problem can be addressed before it becomes and issue. In some cases the doctor will want to see your loved one (or have someone else see them), in others he or she may adjust the medication without seeing them. Sometimes you may have a preference for one of these and it’s frustrating if the doctor suggests otherwise. It’s fine to discuss this frustration with the doctor, but remember, the number one priority is the safety and comfort of your loved one, so be sure that nothing gets in the way of that.
Step 3 - Know about refill policies.
Many of the potent pain medications required to keep ill patients comfortable can be abused. Because of this there are national and state regulations governing your doctor’s use of these medications and pharmacy dispensing. Policies regarding refills of pain medications are often much different from other prescriptions, so be sure you know what the rules are, and be very sure to follow the rules. For example, in some cases, pain medications cannot be refilled early, but you may still need to call in advance, so be sure you keep track of how much medicine you have on hand and don’t run too low.
Step 4 - Clarify anything you don’t understand.
If you or your loved one is not sure about something - ask. It’s best to get things you don’t understand cleared up right away! Some medications or treatments for pain can be dangerous if not used appropriately. Your doctor doesn’t want something bad to happen to your your loved one. He or she would rather answer questions early and avoid trouble later!
It’s very difficult to remember all that goes on at appointments, especially when illness adds to the stress. You may find it helpful to take notes at appointments or when you talk to your doctors office about the pain management plan. Double checking these notes at the end of the conversation makes sure you have it right!
Step 5 - Have a talk about the road ahead.
This isn’t just the “how long have I got, doc?” talk. It’s as important to have an idea of how your loved one’s doctor thinks the road ahead looks as it is to talk about the “end” of the road. He or she has probably had similar patients and from experience can help you prepare for the future. Some patients require periodic increases in medication. Other patients stay at a steady dose, or can even cut back down the road. Still other patients need to change or add medications. If there are particular things that might make the pain worse, it’s good to talk about those. You’ll want to know both what you can do to avoid things that might make pain worse and what to do if they happen anyway.
Step 6 - Explore options with the doctor.
Sometimes non-medical interventions can help with pain - such as relaxation or exercise. Sometimes non-traditional therapies such as acupuncture can help. Sometimes procedures like injections or surgery might be an option to help with pain. Some of these options, however, can make things worse, depending on the patient and the condition, so as always, work as a team with your doctor to get the appropriate care.
Step 7 - Have a plan in case of a “pain crisis.”
Hopefully you never have to use it, but it’s better to be prepared than be caught in a bind. Your loved one’s doctor may be able to give you some things to do in case of a pain crisis. The plan should include who to contact and how. If your loved one is alone, do they have a reliable way to contact you? If your loved one is on Hospice, many “crises” can and will be managed very well by hospice staff ... do you and your loved one know how to contact your hospice in an emergency? If Hospice is not involved, do you have contact information for your doctor and know how to reach him or her even outside of office hours? Do you know have a pharmacy where you could get medications 24 hours a day, even on holidays? It will help to have that number on hand! If in a crisis your doctor recommends that your loved one be seen, do you know where to go for care, such as which ER or hospital to go to? Having a written list of these names and numbers as well as any important facts about your loved one’s disease or condition and an up to date medication list will be very helpful in the worst-case scenario you hope you never face!
Pain Management Links:
Association of Cancer Online Resources
State-of-the-art management of cancer pain for patients, caregivers and health care professionals.
American Pain Society
Research, education and advocacy around treatment for pain.
American Society of Clinical Oncologists
Professional association of physicians who specialize in cancer treatment.
National Institutes of Health, National Cancer Institute
Extensive information and a variety of topics related to cancer.
Memorial Sloan-Kettering Cancer Center
A world-class provider of cancer treatment.
University of Pennsylvania Cancer Center
Information and tools on cancer treatment.
Center to Advance Palliative Care
Detailed descriptions to better understand hospice and palliative care.
Coping with side effects of cancer treatments
Guidance on managing common side effects of cancer treatment for patients and professionals.
Coping with fatigue
A useful article to guide seriously ill patients suffering from fatigue.