This post is all about pain and the myths and realities in hospice care
Palliative care usually starts too late. We see it on a daily basis at Stepping Stone Hospice… Most patients die within days of becoming patients. Doctors continue to treat the patients until days before their death. Referring a patient to Hospice means “conceding defeat”.
If patients were timorously referred to Hospice they would enjoy far greater quality of life than they do without. It is a total fallacy that Hospice patients die sooner than non-hospice patients.
Research published in the Journal of Pain and Symptom Management found that terminally ill patients who received hospice care lived on average 29 days longer than those who did not opt for hospice near the end of life. Source: National Hospice and Palliative Care Organization
For the entire sample of all disease cohorts, the mean number of survival days was eight days longer for hospice patients than for non hospice patients (337 vs. 329 days, P ¼ 0.00079).
This difference includes the effects of many factors including demographics and sample sizes of the two cohorts. When we normalized these other factors, the difference in days increases to 29 days, as we show later in the regression. The survival period was significantly longer for the hospice cohort than for the non hospice cohort for the following diseases: CHF (402 vs. 321 days, P ¼ 0.0540), lung cancer (279 vs. 240 days, P < 0.0001), and pancreatic cancer (210 vs. 189 days, P ¼ 0.0102). The survival period was longer for the hospice cohort than non hospice cohort for colon cancer, and the difference approached but did not reach statistical significance (414 vs. 381 days, P ¼.0792). http://www.nhpco.org/sites/default/files/public/JPSM/march-2007-article.pdf
World Health Organization (WHO) definition of Palliative Care Palliative Care is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering, the early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.
I reposted this amazing article/post By Terre Mirsch on the myths surrounding Hospice
Unmanaged pain is one of the greatest fears of those facing serious illness and is the reason that many choose hospice care. Uncontrolled pain causes suffering and significantly impacts quality of life and total wellbeing. Pain may also lead to other problems including difficulty sleeping, fatigue, poor appetite, and a compromised immune system. Persistent pain can also lead to social isolation, depression, anger, and anxiety. Spiritually, one may begin to question the meaning of the pain and wonder “Why is God doing this to me?”
The good news is that living with advanced illness does not mean that one has to live with uncontrolled pain. The majority of time, pain can be controlled by relatively simple means using easy to administer medications. But caregivers often worry that they do not have the knowledge and skills, or the confidence to administer the proper medications or treatments prescribed for their loved ones.
Misconceptions about pain and commonly used medications may create barriers to controlling pain effectively. Understanding what pain is, how it can be effectively managed, and alleviating common misconceptions is the first step towards reducing these barriers.
Myth: “My loved one doesn’t look like he is in pain. That must mean that the pain is not that bad.”
Reality: In 1984, pain research expert, Margo McCafferty defined pain as “whatever the experiencing person says it is, existing whenever he says it does.” We cannot tell if a person is having pain by looking at them. Only the person having pain knows how it feels so it is important that we ask the person if they are having pain and how it feels and we need to listen to their answer.
Myth: “It is best to wait until the pain is severe before taking pain medications.”
Reality: It is best to stay ahead of the pain by taking medications around the clock when treating persistent pain. The longer pain goes untreated, the harder it is to ease. If the prescription says to take the medicine at certain times or at certain time intervals (for example, every four hours), make sure this is done.
Myth: “People who take strong narcotic pain medication become addicted.”
Reality: Opioid analgesics (also referred to as narcotics) are highly effective for many types of pain and can be given safely. Addiction is defined by a compulsive craving and use of a drug, which results in physical, psychological, and social harm to the user. Addiction is NOT a problem for people who take opioid medications for persistent uncontrolled pain.
Myth: “When people with chronic pain are treated with strong pain medications, they will have to take more and more medication as time goes by to get the same pain relief.”
Reality: Most patients take stable dosages of medication. Increases in medication dosage may result from worsening physical status. Sometimes tolerance develops and more medication is needed. It is important to understand that there is no highest dose for the amount of opioid medication that can be prescribed – there will always be something more that can be given to achieve comfort.
Myth: “The side effects of strong pain medications make people too sleepy.”
Reality: The goal of pain management is to achieve comfort while maintaining optimal alertness. Side effects of drowsiness will reduce or disappear within a few days. The most common side effect is constipation which can be controlled with a regular routine of medications aimed at keeping bowels regular.
Myth: “Once you start taking morphine, the end is always near.”
Reality: Morphine does not initiate the final phase of life or lead directly to death. Morphine provides relief of severe, chronic pain, promotes relaxation and comfort, and can also help to make breathing easier. Morphine does not lead to death. Morphine does not kill.
Good pain management improves quality of life and may even extend life. Palliative care and hospice professionals can provide you and your loved one with expert help that can help to manage the physical and emotional pain of life limiting illness. Caring for a loved one in pain can be difficult but with the right guidance and understanding, both you and your loved one can experience the comfort and support you deserve.
I know that Hospice provided my child with life. I believe that Vic would have died months earlier if she had not been treated by Hospice. It is a basic human right to die with dignity. I am grateful that Vic had the privilege of dying with dignity.