What is palliative care?
The World Health Organization has developed the official definition of palliative care, calling it "the active total care of clients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible quality of life for clients and their families.”
Hospice palliative care is designed to support other treatments clients may receive so we can help them live in comfort. We work very hard to help our clients, their caregivers and families manage the challenges they face during hospice care. All aspects of our care are provided in a manner that is sensitive to our clients’ personal, cultural and religious values, including their beliefs, practices and preparedness to deal with the end stage of life process.
When is palliative care needed?
Palliative care can help a client at any stage of a life-limiting illness or condition. Although it is best introduced early in the plan of care, it can be received at any time. A client may need palliative care and support if he or she:
- is suffering from symptoms that are hard to treat such as pain, nausea, fatigue, depression and anxiety
- needs help understanding treatment choices
- wants support when making difficult medical decisions
Palliative care has a number of benefits:
- vigorous treatment of pain and symptoms such as nausea and fatigue, depression and anxiety throughout the illness
- keeping clients as comfortable and active as possible so they can pursue meaningful daily activities in the manner they desire as long as possible
- emotional support for the client, caregivers and family when needed
Palliative care is helpful in preventing these side effects of pain:
How does palliative care work to remove, or at least control, pain?
- increased stress on the cardiovascular system through increased blood pressure and heart rate, and increased risk for thrombosis and pulmonary emboli
- delayed rehabilitation, immobility and possible resulting skin breakdowns
- disruption of normal sleep patterns
- lack of interest in eating and potential dehydration
- reluctance to take deep breaths and cough postoperatively, which can lead to difficulty in breathing, chest pain, coughing and pneumonia
- increased release of stress hormones, negatively affecting normal urinary and renal function
- increased potential for confusion, delirium and increased risk of falls
- delayed gastric emptying and constipation
It’s important to understand that there are no miracle medications or methods of care that will stop every type of pain. However, according to our clients, we have had great success in most cases in eliminating pain completely. In the other cases, we have been able to reduce pain to a level acceptable to our clients.
We begin our efforts to control pain by reviewing our client’s medical history and current condition. We then conduct a comprehensive assessment to determine the location, probable source, type and intensity of the pain our client is experiencing. The client is very important in this process because only he or she can communicate where the pain is, the type of pain and its level of intensity.
Based on this assessment, our RN Case Manager and Medical Director (our Director is a Doctor of Internal Medicine) work closely together to develop an initial plan of care that identifies the medication(s) we will use initially, their dosage(s) and frequencies of use.
The process then continues with ongoing re-assessments to determine if the medication(s) are providing effective relief and/or causing undesirable side effects or other complications. We also monitor our client’s tolerance to the medication(s). Based on this re-assessment, the Medical Director may change the dosage, frequency of use or perhaps the medication(s), depending on the amount of pain the client may still be experiencing.
This continuous re-assessment and monitoring cycle continues until pain control is achieved. At that point, the RN continues to re-assess on each visit to ensure the pain remains controlled and other pain or side effects issues do not arise. Our RN Case Managers visit each of our clients at least twice each week every week to make sure we understand our client’s status and any changes that may occur. We also rely heavily on the eyes and ears of our Certified Nursing Assistants and the client’s own caregivers to ensure we receive real time feedback on our client’s condition.
In determining which medications to use, most hospices have general guidelines in place (some refer to them as Analgesic Ladders). Our guidelines are based on the history of results we have experienced with previous clients who have had the same type and intensity of pain.
The concept is very simple. We begin with the least intrusive medication (possibly nothing more than aspirin or Ibuprofen) and, if necessary, progressively move up to the strongest medications available, such as morphine, Dilaudid and similar medications.
Some of the medications we use are classified as opioids and are the sources of most of the misconceptions and concerns we hear about hospice care and pain control. We hope the following brief description of opioids will relieve concerns you may have about the use of this class of medication.
What Are Opioids
Opioids are powerful pain-relieving substances that are used as pain medications. Some are derived from plants, some are manufactured and others, such as endorphins, occur naturally in the body.
Opioids are very effective in the treatment of severe pain. In fact, they are frequently used to treat acute pain such as post-surgical pain, as well as severe chronic pain caused by diseases like cancer. These drugs can be effective and very safe when taken under close medical supervision.
Chronic pain victims who can’t produce enough opioids to control their pain often benefit from the addition of opioid-based medications.
Types of Opioids
Depending on the client’s needs, we may prescribe one or more of several types of opioids. Opioids can be formulated as long-acting or short-acting pain medications. They can be injected or taken intravenously. However, we normally use pills or patches since they are easier and more comfortable to use.
How Opioids Work
Opioids mimic the effects of endorphins produced by the body. Endorphins are produced at various sites in the body and appear to function as the body’s natural defense against pain. Opioids act by attaching themselves to nerve cells (also called neurons) and depressing (i.e., decreasing or slowing) the nerve cell’s activity for a short period of time until the body removes them. When they leave the nerve cell, it returns to its normal function.
Opioids have the same effects as endorphins because they appear similar and are able to fit onto the nerve cell without the cell realizing it isn’t an endorphin. Opioids are more potent than endorphins and their effects can be readily seen.
When an opioid attaches itself to a nerve cell whose function is to send pain signals to the brain, the opioid will block the transmission of those signals. When it attaches to other nerve cells, then it will depress the normal function of that particular nerve cell.
So, for example, if the nerve affects respiration, the opioid may slow down the breathing rate. Such effects are dose related; the higher the dose given, the stronger the effect. This is true for both pain relief and some side effects.
Opioid Side Effects and Other Complications
The only potentially dangerous opioid side effect is severe respiratory depression in some people. Mild degrees of respiratory depression are not dangerous. Opioids can be effective against moderately severe pain in smaller doses which do not cause dangerous degrees of respiratory depression. When pain is not relieved by doses we consider safe, then we use alternative forms of pain relief rather than increasing the dose. However, in our experience, we have seldom had to change medications due to unwanted side effects.
Opioids tend to induce euphoria by affecting the regions of the brain that cause pleasure. Users generally report feeling warm, drowsy and content. Opioids relieve stress and discomfort by creating a relaxed detachment from pain, desires and activity.
Many people with chronic pain generally tolerate the same opioid dosage for years without building up any significant tolerance to or developing a dependence on the drug. Unfortunately, many chronic pain sufferers who take opioids may wrongly be labeled as addicts, even if they do not meet the actual criteria for addiction. There is sometimes a certain stigma associated with taking narcotic pain medication, which can be frustrating for the person with severe chronic pain.
In addition to tolerance and physical dependence, opioids do have a number of other potential side effects. These can include:
- urinary retention
- difficulty breathing
- sexual dysfunction
- low blood pressure
- itching sensations
Opioids tend to affect seniors and children more than adults, so these individuals must be monitored even more carefully. As mentioned earlier, we start opioids at very low doses and slowly increase them until a satisfactory therapeutic level is reached.
Certain drugs may interact negatively with opioids, so we careful monitor our clients’ use of other prescription and non-prescription medications to avoid potential complications from drug interactions.
Why Use Opioids at All?
Opioids are very effective at reducing severe pain. Many people with chronic pain get relief only through opioid use. For these people, the benefits of opioids outweigh the potential risks. For many people with chronic pain, opioids help give them back their quality of life.
We end this section with a dozen questions and answers about opioids.
1. What are the goals of treatment with opioids?
- eliminate chronic pain levels or at least reduce pain to an acceptable level
- improve quality of life by preventing pain from affecting our client’s ability to engage
in desired activities of daily life
2. Are opioids dangerous?
When taken as prescribed by a physician, opioids are among the safest pain control drugs available.
In September 2010 the Journal of Palliative medicine reported the results of a study on the use of opioids by hospice clients living at home. The study determined opioid use is both safe and effective for hospice clients. It also demonstrated that clients who ultimately received at least twice the amount of their initial dose lived longer than those who received lower doses. (They provided no conclusion regarding the reasons clients live longer. We wonder if it might simply be due to the reduction of pain side effects we mentioned earlier.)
3. Will I get high or lose control if I take opioid medications?
When you take opioids on a regular schedule determined by your physician, you quickly develop a tolerance for those potential side effects and feel completely normal. Long-term opioid users, as a group, have driving records for accidents and violations that are the same as everyone else’s.
4. Will I hurt myself because I don’t feel any pain?
No. Opioids improve functioning by reducing pain levels. They don’t affect your ability to perceive new pain.
5. Will I become dependent?
You may. Dependence means if the opioids are abruptly discontinued you may have a physical withdrawal reaction, similar to having the flu. This reaction can be greatly reduced, if not prevented, by gradually tapering off the medication. Dependence is a physical phenomenon, not a sign of addiction.
6. What if I had a previous substance abuse problem?
This should not prevent a trial of opioids for pain control. Studies at Harvard Medical School and the University of Washington indicate that a past history of substance abuse has little or no predictive value for failure of opioid treatment. If you currently have behavioral or substance abuse problems, you may appear to have trouble with opioid treatment.
7. What about the drug overdose deaths reported in the media?
Opioids are safe for patients who take their medicine as prescribed. Drug overdose deaths happen with habitual substance abusers and are usually the result of combining drugs with overdoses of alcohol and other drugs.
As previously mentioned, hospice care does nothing to hasten death or extend life and that is particularly true with our use of medications for pain control. Our concern is improving and maintaining the highest possible quality of life for our clients.
8. Will I have to take opioids for the rest of my life?
Opioids can be discontinued if the client recovers from chronic pain and the opioids are no longer needed. However, in our experience, clients who require opioids for pain control will generally continue to use them during the duration of their end stage of life.
9. Will I get addicted and how can I tell if I am?
Addiction is defined by the American Society of Addiction Medicine as continued use in spite of causing harm. Clinical research indicates that opioid addiction in pain patients is rare. If opioids make your life better by controlling pain, you are a pain patient. If they make your life worse and you continue to use them, you may be an addict.
10. Will I have to take larger and larger doses to control my pain?
For most patients, when acceptable pain control is achieved, their dose remains stable over long periods of time.
11. Will opioids damage my liver?
As far as your liver is concerned, the answer is no. Since opioids occur naturally in the body and mimic the ones we use, they are not harmful to any organ system. They can be taken safely for a lifetime, if necessary.
12. What is the correct dose?
The amount that allows optimal functioning is the correct dose. Again, as previously mentioned, we will not increase doses to the point where our client sleeps an excessive amount because there is no quality to life in that condition.
Autumn Journey Hospice
5347 Spring Valley Road
Dallas, TX 75254