In the past 40 years, attitudes towards death and dying in America and much of the rest of the world have slowly changed. The hospice movement has grown considerably and now constitutes its own segment of the health care system. Prior to hospice, people often died alone, in institutional settings like hospitals.
While some people still pass away without their loved ones around them, many are choosing to receive palliative care at home as a way to make the end of their lives as comfortable and rewarding as possible. But there are still many common misconceptions about hospice. Nobody likes to dwell on the subject of death, so people are naturally reluctant to study what hospice care is until they are in need of hospice services.
I hope this article will dispel five of the common myths.
Myth No. 1: Hospice places a time limit on patient stays and hastens death.
Many people mistakenly believe that to receive hospice care, the patient must be expected to live less than six months. But there is no rule determined by life expectancy. This misconception can be traced back to Medicare, which gives assistance in the form of benefit periods. Each initial benefit period lasts 90 days and Medicare estimates people in hospice usually only need two periods.
(MORE: Learning to Live While Dying)
If after six months, however, you are still in need of hospice services, you can receive an unlimited amount of 60-day benefit periods if a hospice director or doctor recertifies that you’re terminally ill. Also, if you outlive the six-month Medicare estimation, you can go off hospice care and come back when you need it. People sometimes live longer because the reduction of stress and increase of comfort can benefit health in a very positive way.
The reason many patients only receive hospice care for short periods of time is because many people who could benefit are not referred. When people are referred, it is usually well past the time they could have originally been admitted into a hospice program. Although many professionals are beginning to understand hospice care to a higher degree, they still often refer patients only when they are unmistakably near death.
Palliative care is not designed to shorten or lengthen life, but rather to relieve emotional and physical pain while managing symptoms.
Myth No. 2: People have to go to hospice centers in order to receive hospice care.
First and foremost, hospice care is a philosophy on death and dying rather than a physical place. People are able to receive hospice care wherever they feel most comfortable, whether that is in their home or in a licensed facility.
The philosophy of palliative care is to allow the patient the right to die wherever they desire. If patients choose to remain in their homes, hospice services are still available 24/7. Also, hospice meets the needs of patients whether or not the patients’ funds have been depleted. Care is not denied or reduced.
Myth No. 3: Hospice care requires you to stop taking medications.
This isn’t always true. Many people fear hospice because they know that stopping medications can mean accelerated death. While it is true that hospice focuses on a relief-based, rather than a curative approach, the decision to halt medication is usually left up to the patient.
Depending on where people are in their diseases, it may be best to stop taking a medication that’s a source of discomfort. But this is determined case by case. For example, if someone has cancer and has made the decision to receive palliative care, he or she usually stops treatments such as chemotherapy and moves towards ones to be more comfortable.
Myth No. 4: Hospice depends on sedation as a major way to manage patients’ pain.
For most people facing a terminal illness, it’s not death they fear most, but the processes and pains of dying. With pain comes pain management, and many people fear that hospice workers intentionally sedate patients as the go-to method for dealing with pain. While there have been abuses claimed, this is not the norm for hospice care.
If patients have chronic pain, they are started at low doses and if the low dose works, they remain at that dosage. Pain management is only increased if the patient is still suffering from pain.
Hospice and palliative care has tried to show people that dying does not need to be painful and undignified. Dying can be comfortable and on individual terms.
In addition to physical pain, there is emotional and psychological pain that hospice helps patients and their families manage. Patients can take advantage of spiritual counseling. And hospice provides bereavement assistance for at least a year following a patient’s death, with counseling beginning before the patient has passed on.
Myth No. 5: Once you’re enrolled in a hospice program, there’s no turning back.
This is absolutely untrue. Patients can stop hospice treatment at any time they wish and return to a curative-based approach if they feel that will benefit them more. Maybe a new treatment has been discovered and the patient wants to give it a try, or maybe he or she has begun to show signs of improvement, rather than decline.
Either way, a patient can opt out of hospice for any reason. Hospice professionals may even be the ones to discharge a patient if they see viable signs of recovery. If after a period of recovery the patient wants to return to hospice, Medicare generally pays for the extended coverage.
We’re lucky we live in an age where death is beginning to be viewed as a natural process of life that can be managed. With medical advances and accurate technology, life-threatening medical conditions can be monitored. Monitoring diseases allows doctors to make estimates about how long patients are expected to live.
In the past, patients were often intentionally left out of the loop when it came to their remaining life. Doctors and nurses mistakenly believed informing patients about their impending death would hasten the process. Health care workers were not trained to deal with the dying in a spiritual and psychologically productive way.
There is nothing wrong, however, with anticipating and preparing for death. This gives people closure not only in their own lives, but in the lives of those around them.
When a loved one does make the transition into hospice, it is not about giving up or hastening death. Rather, it is about making passing as comfortable and painless as possible.
Jacob Edward is the founder and manager of Senior Planning in Phoenix, Ariz., which has helped many Arizona seniors and their families navigate the process of long-term care.
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