The team at Above and Beyond Home Health Care and Hospice have heard these questions from clients as well and are familiar with the general answers to each plus other concerns.
The answer to the first one, unfortunately, is “it depends” since there are different reasons for a provider to recommend this type of care. In some cases, there may be high amounts of pain due to whatever health condition the person is battling. In other instances, the pain itself may be manageable but has the possibility of increasing in the future, or other things may be going wrong with the body. This is often the case in terminal cancer situations where it continues to progress through the body. Or in cases with advanced dementia, the body may be functional and pain not considered extreme but the mental process has been become permanently disrupted.
But the answer to the second question is usually “yes!”
Most providers are willing to work with a patient, their family, and loved ones, and other members of their support team to make sure they have adequate medication to reduce pain and keep levels low. It’s a fine balance trying to keep an eye on pain levels but also keeping the patient as lucid as possible so they can still interact with people around them and arrange any final details – some legal documentation requires people to have a sound mind and not be under the influence of medications.
For those who have questions about pain management efforts and possibilities, the following information may be helpful.
Pain Levels Can Change
Nothing is permanent when dealing with pain management. Your provider may set medication dosage based on pain levels at a certain point and then will want to check in regularly in case something needs to be changed. He or she might suggest increasing a dosage, trying another medication if one is no longer effective, or is causing side effects. A caregiver or family member may be asked to share their observations about how the patient as well. Sometimes it’s a matter of something not working effectively, such as pain medication that only lasts for four hours instead of six. Or a certain medication may be hard to consume in one pill may need to be tried in another (capsules vs. liquid for instance.)
In traditional care situations, a provider may be uncomfortable providing certain stronger medications, either in large or small amounts. This is often due to the possibility of long-term addiction or long-term damage to the body for some. If a person has been told that they only have a few months to live, a provider may be more willing to recommend these types to really cut down pain levels.
Familiarity With Experts
Although end of life situations may be new to you and your family, many providers, nurses and hospice staff have worked with many other patients in similar situations. Every patient and every situation can be a little different, but we have heard similar concerns and questions from patients. This makes us comfortable providing comfort to patients as well as helping answer questions or pointing them in the right direction to get assistance.
Comfort In Different Situations
How people can deal with their pain can differ for everyone. If someone wants to try all sorts of medications to block a good deal of pain even if it will slow them down, we’ll work with them to find the right combinations. If they want to try yoga or tai chi or natural remedies to try to cut down on some medications, that’s OK. If they want to try medical marijuana, they’ll have to follow their laws of their community and state but this may be an option for dealing with pain.
Communication Is Key
A patient needs to be clear in what they are experiencing and feeling. This will give their provider and other support staff clear guidance on what types of medications work best or need to be adjusted. Someone receiving end of life care may already be at the point where they are trying to look at the big picture and accept what’s happening to them. Others may not want to bother people with minor inconveniences like constipation or indigestion or describe their true pain level. But a provider needs to hear these details to effectively regulate pain levels and adjust as needed. Even using a standard “how do you feel” chart like the 10 levels of smiley/frowny faces could be a good indicator. If you don’t adequately share what you’re feeling, your provider may not adequately get things right for you.
End of life care can certainly create some challenges and not just the physical ones. It can be a scary time mentally, emotionally, and spiritually too. But effectively discussing matters with your provider and doing research can help. This month, some other resources may be available through the American Chronic Pain Association, which has organized American Pain Awareness Month in September.