Hospice care is widely misunderstood. Here's what you should know.
Brenda Garrett, Guest columnist
It’s hard to think about hospice care because it’s hard to think about death.
Hospice is an approach to the final days that focuses on the quality of life for patients with limited life expectancy. As a social worker at Crossroads Hospice and Palliative Care, I know it is a choice, and not an easy one.
The recent news that former President Jimmy Carter has entered hospice care has created an opportunity for hospice workers like me to explain what we do, clear up some misconceptions about our work, and encourage people to plan ahead for end-of-life care for themselves or their loved ones. This is also an ideal time for me to speak up since March is Social Work Month. We’re taking the opportunity to leverage our value, while also addressing common misconceptions about hospice.
In most cases, hospice means it’s time to stop attempts to fight a fatal disease, either because the treatment isn’t working or it’s just too painful. And pondering that option forces us to confront death, something many people want to avoid. In my time as a social worker at Crossroads specializing in hospice care, I’ve seen how this can make people reluctant to accept hospice — when it might be the best path forward.
Hospice patients are, by definition, seriously ill, and often suffering considerable physical discomfort. For this, hospice teams provide physical care, such as pain or symptom management and assistance with bathing. Patients are also often under emotional or spiritual duress as they face the end of their lives, and so hospice provides emotional and spiritual support to them and their families. I spend a good deal of time listening to patients share their stories and dreams. It’s the best part of my job.
One misconception I’ve heard often is that hospice hastens death. Because of this belief, patients are sometimes reluctant to enter hospice, and family members helping loved ones sometimes see it as a form of abandonment — a terrible feeling when they are already facing a terrible loss.
But entering hospice is not “giving up.” Hospice care is for patients in a condition such that a doctor would not be surprised if the patient died within six months. It provides comfort and support to these individuals, and by easing pain and distress, allows them to live their remaining days more fully. Some patients do leave hospice if their conditions improve, and hospice helps extend life in some cases.
We aim to enable our patients to live their final days with dignity, and to spend their time attending to the things that matter to them, like their children and grandchildren — or, in the case of one client of mine, planning one last night at his favorite drinking and entertainment establishment. He passed away before I could arrange a visit, but his ashes were apparently scattered inside that favorite “happy place!”
Another misconception my Crossroads’ team has heard is that hospice care can only be provided in a facility, or to bedridden patients. In fact, hospice is most commonly delivered in a patient’s own home, where social workers like me, as well as an entire team of nurses, volunteers and spiritual care providers, make regular scheduled visits. And when we recognize the symptoms that a patient’s death is drawing near, we activate our Evenmore Care program, which allows us to keep a member of our team bedside to support the patient and their family through this final transition. Our goal is that no one dies alone.
Some people think hospice is expensive, and it may not be covered. Medicare and many private insurance companies are payment possibilities for hospice care, though every family should find out about the financial options for their specific circumstances.
Because of these misconceptions, many people begin hospice care only in their very last days and miss out on the help it could have offered over the preceding weeks and months; nearly 1 million Americans who might be eligible for hospice die each year without using it. I have seen how much families struggle with the decision to move to hospice care, and I understand why. We don’t want to accept death. My own husband didn’t; he was still working full-time two years after a terminal cancer diagnosis.
But I also have seen the considerable good that hospice can do, and how much the right support can help to ease the pain of the end of life for patients and their loved ones. When my husband ultimately went into hospice before passing away, what I learned by being part of a hospice care team helped me through a traumatic time.
I urge everyone to plan ahead for end-of-life care by putting their last wishes in writing — taking strain off of family members — and not to avoid seeking the help hospice can provide. You do not have to face these difficult days alone. I’m proud that it’s my job as a social worker to help families navigate such times. And I’m proud of all of the social workers out there as we take time this month to focus on our profession.
Brenda Garrett is a social worker at Crossroads Hospice & Palliative Care in Oklahoma City. Social Work Month is celebrated throughout March.