November is National Hospice and Palliative Care Month, a time established to recognize the benefits of unique care that focuses on the mind, body, and spirit to improve the quality of life.
Hospice is about supporting people who are facing advanced illness by helping them to continue living as fully as possible in the time that remains. It’s about bringing support to both the patient and their family so they can shift their focus from the disease to life. We like to say hospice is actually about hope: hope for days lived more fully, hope for comfort, hope for peace, and hope for dignity.
Unfortunately, hospice remains misunderstood. Myths about what hospice is or how it works can make those who could benefit from the full resources and support hospice brings delay getting care. We hear too often from our patients and their families that they wished they had started hospice sooner. So, we hope by debunking a few of these myths, we can help provide a better understanding of what hospice really is – a kind and compassionate philosophy of care designed to relieve suffering and to support the celebration of each individual life.
MYTH #1 – Hospice is this place where people go to die – to give up hope.
Fact: Quite the opposite. Hospice is not a place. It is a special kind of healthcare focused on keeping the patient comfortable once the patient and physician have decided that the underlying disease can no longer be treated or cured. Hospice care can occur in a variety of settings. It neither hastens nor postpones death and is focused on the belief that quality of life is as important as length of life. Hospice care can be provided at home, a nursing home or in an assisted living facility. It is not a specific place, but an ideal, a philosophy, a mission carried out by many capable, dedicated hands. It is hope. Hope that each life can end in the arms of compassion, dignity and peace.
MYTH #2 – Hospice is just for the patient.
Fact: Hospice supports the patient, family and the caregiver by empowering them with knowledge, physical and psychological support. While service to the patient is a large part of what hospice provides, it is so much more. Hospice provides a wealth of support for those all-important family members we call caregivers. The role of a caregiver is often selfless, but it can also be stressful and overwhelming. Respite care provides family caregivers a much-needed break from caregiving knowing their loved one is safe. The extra layer of care hospice brings can help families avoid becoming overwhelmed and keep caregiving meaningful and manageable. We help the family caregiver feel empowered and supported and help the entire family through spiritual, emotional and grief support.
MYTH #3 – Patients are no longer under the care of their own doctor after signing on with a hospice organization.
Fact: Each patient’s physician remains an active part of their care. We work together, with your physician to create a plan of care uniquely tailored to your needs, one that your physician agrees is right for you.
MYTH #4 – Hospice is expensive.
Fact: Hospice is part of your Medicare Benefit. Medicare and other private insurances cover the cost of hospice care for eligible patients.
MYTH #5 – Hospice is for the last few days of life.
Fact: Hospice is about enhancing quality of life and works best when started early, allowing you to get your full Hospice Benefit. Hospice becomes a consideration when either your physician determines trying to cure the disease is no longer effective or beneficial or you or your loved one is tired of aggressive treatment and chooses to focus on quality of life instead.
MYTH #6 – Once you accept hospice, it’s forever.
Fact: The choice to continue receiving hospice care is always yours, you can end services at any time. If a new treatment becomes available and you decide to leave hospice and pursue that treatment, you can do so. It is not uncommon to improve under hospice care and ‘graduate’ from hospice.
MYTH #7 – Hospice is only for cancer.
Fact: Hospice care is available to anyone with a life limiting disease, illness or condition. Hospice is available for serious illnesses like COPD, heart disease, liver disease, kidney disease, ALS, AIDS, Alzheimer’s, dementia, stroke and others. A cancer diagnosis represents less than half of hospice patients.
MYTH #8- Hospice care requires you to stop taking medications.
Fact: Depending on where people are in their disease, 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 improve comfort. The real goal is to make sure you are on the right medications that bring the most benefit for your condition as it is now. Sometimes this means actually adding medications rather than removing them.
MYTH #9 – Patients get kicked off of hospice care if they live longer than 6 months.
Fact: If you live longer than 6 months, you can still get hospice care, as long as the hospice medical director or other hospice doctor recertifies that you’re illness is still life-limiting. You can get hospice care for two 90-day benefit periods, followed by an unlimited number of 60-day benefit periods.
MYTH #10 – Only a physician can refer someone for hospice care.
Fact: It’s true that your physician must sign an order for hospice care. But anyone can ask for hospice care. In fact, many physicians welcome an indication from their patients that they are ready to have a conversation about hospice. We can also help initiate a conversation with your physician. Too often people feel that they have to wait for their physician to bring up hospice, when in reality, this can delay getting the care that can bring the extra support they need.
We hope our myth-debunking helps you better understand this unique type of care and the profound benefits hospice brings to those living with serious illness. Remember, it’s your right to choose hospice care. But if you have more questions one call to our friendly staff can help you understand and navigate the options available. Our advance care planning team is here to help you decide if hospice is right for you or your loved one.
We truly value the fact that we’ve helped improve the quality of life for families facing serious illness in our community for almost 50 years. We’re here to help you and your family as well.