Common Myths About Hospice
The decision to enroll in hospice is a difficult one. The hesitancy to opt to choose hospice care for yourself or a loved one can stem from a number of different reasons. Briefly, I want to look at a few of those reasons and debunk some myths about hospice. While this won’t be an extensive review of hospice it will hopefully help clarify some misconceptions about hospice.
Hospice Helps You Die Faster
For some the idea of passing quickly without memory loss, anxiety or pain sounds comforting. With the passage of the End of Life Option Act in California that became a real and legal option for those facing terminal illness. Some hospice agencies make this option part of their services while other agencies decline to offer assistance based on their philosophy as a hospice provider (First Serenity Hospice does not offer this option). Regardless, the philosophy of hospice emphasizes the quality of life and not the expediency of death.
Practically this means addressing the physical and social/emotional needs of the patient and family to provide the best quality of life possible. The most common instance of this is in terms of pain and anxiety in patients. The goal within hospice is to reduce as much as possible any pain, discomfort or anxiety a person is experiencing so that he or she can enjoy life to the fullest extent. While medication including morphine is used to provide relief, the purpose of that relief is to give back to the person some quality of life. If the medication simply knocks out the person or makes them confused or lethargic than the quality of life has not been improved, but lessened. For some people with the capacity they may choose to live with some discomfort to be more alert and active, but the presence of pain relief options is present and available at all times as needed. Moreover, Social Workers and Chaplains are available to provide other anxiety and stress relief options alternative or in conjunction with medication.
Since the hospice philosophy emphasizes the quality of life it does not encourage prematurely ending life.
In the same way, quality hospice agencies do not speed up a person’s decline for anyone’s benefit. For some people, it is hard to imagine medical professionals inflicting harm intentionally, but sadly history provides us with examples from Nazi doctors performing trials on unwilling Jews to the Tuskegee Syphilis Experiment that mistreated and misled African American participants. In hospice, the patient and the family have the power to make choices related to their care. As mentioned previously, a patient can accept or reject medication or services if they see fit and a family or patient can quit service or switch hospice providers at any time if the care provided is not meeting their needs.
Hospice Means Giving Up on Life
By the time someone chooses hospice services they have likely been through months and likely years of illness and treatment. Many times the treatments themselves can be physically and emotionally devastating. It is understandable that a person would pursue all available options to prolong life. But most people reach a point where the strain and toll physically and emotionally become too much or it becomes clear that treatments have been ineffective in curing or slowing a disease. It is usually at this point that the idea of hospice is introduced. And while it may make perfect sense to end ineffective and possibly taxing treatments, there is a natural instinct to continue to fight for life and that discontinuing treatments and starting hospice services is giving up on yourself or a loved one.
First, while hospice is a choice to move away from invasive or intensive treatments like chemotherapy or dialysis, it is not the withdrawal of quality medical care to hasten death. While curative treatments like chemotherapy are stopped, the care provided for the person does not stop but transitions toward providing comfort and quality of life. The remaining life for that person may be shorter than if aggressive treatments continued, but the ability of the person to hopefully engage and enjoy his or her life will hopefully increase.
While it is true that many medications may be discontinued, especially those that may have adverse side effects, this does not mean that all medication and treatments cease. If anything a more holistic approach to treatment is engaged which includes emotional and spiritual support for the patient and family. Hospice services include an increase in the frequency of nursing visits at home, supplies, and medications delivered to the person’s home as well as medical equipment; all covered under hospice services without cost to the person or family. Furthermore, while there is a shift of focus to comfort care that does not mean a person is only prescribed pain relievers. For instance, if a person has an infection, antibiotics are given to combat the infection. If a person has the flu the hospice agency will treat the flu. If a person has problems with her feet she is free to continue seeing a podiatrist or if a person has problems with his ears he can continue to see an ENT or receive treatment from the hospice physician as appropriate.
In this sense, hospice is not about giving up on life, but accepting where life has led a person and giving that person the best quality of life in the time remaining.
Hospice Means There are Only Six Months Left
Hospice many times is associated with the idea that a person has only six months left to live. The following assumption is that either the person is going to die within that six months or if he or she is likely to live beyond that he or she is not appropriate for hospice. While those assumptions are not completely wrong, they are not completely accurate either.
The six-month idea comes from Medicare’s requirement that to be appropriate or eligible for hospice a person has to have a terminal illness that could result in death within the next six months. The guidelines around hospice developed during a time in which cancer was a quick and uncontrollable disease, and while some people are diagnosed with quick moving cancers and diseases that do not respond to medication or treatment and result in a quick decline and death, medicine has advanced to the point where most diseases are not immediate death sentences.
Those who work for and with Medicare understand that the journey a person and family embark on at the end of life can be a long and winding one. And while the six month idea recognizes that a person is confronted with an illness that in the worst case scenario can lead to death in the next six months, the six month criteria is instead used to acknowledge that a person has an incurable disease that requires a new approach from a team of care providers focused on quality of life rather than curative treatments. Most people do not regret accepting hospice services and support too soon, but rather that they waited too long to accept the care, services and life-affirming support hospice provides.