A Family Isn’t Ready for a Hospice Referral: What Now?
Deciding when a loved one is ready for a hospice referral can be a trying time for family members. There can often be great reluctance – even denial – to accept the fact that a loved one is dying.
“They want to hold on to the hope that the next cancer treatment or some new gene therapy will be the thing that cures their loved one,” explains Sandra Petrosino, LMSW, Palliative Social Worker in the Lenexa, KS, office of Crossroads Hospice & Palliative Care. “It’s a difficult time for them.”
For some, just the word “hospice” alone can bring up uncomfortable thoughts and emotions, she says. That’s why it’s important for social workers or other outreach professionals to help get family members prepared for the inevitable hospice referral decision. That often involves education and counseling.
“We help them comprehend what it means for a patient to be in hospice,” says Petrosino. “It’s not a death warrant. It’s really about helping them better understand the patient’s diagnosis and how hospice care can help ease any pain the patient may be experiencing and help improve their quality of life.”
Creating a Comfortable Space
According to Anna Giles, LMSW, Palliative Social Worker in Crossroads’ Independence, MO, office, family members may misconstrue general information about what hospice entails that they get from the media or other sources. For example, they may read that hospice criteria calls for a diagnosis that the patient is going to die within six months, and they don’t want to accept that limitation for their loved one.
“We often get more pushback from the families than the patients themselves,” Sandra said. “Often it’s the family that wants more tests to be run and is having more trouble letting go – even though the patient has said they’re ready.”
It’s important to create a comfortable space for families to ease into hospice referral conversations – perhaps by discussing how palliative care can help the patient by easing the pain they are experiencing. Gradually, as they see the benefits of hospice services, they may be more willing to explore additional options.
“Sometimes the family feels the patient isn’t ready for hospice,” said Anna. “So we try to help them think about: What will it look like when they are ready? Will it be after one more treatment is tried? Or maybe the lack of an emergency?”
Many patients experience more bad days than good days, she continued to explain. Getting the family to describe what looks like a good day versus a bad day can be a step toward discussing how hospice can provide the support they need to keep the patient living at home, where they are happiest and most comfortable surrounded by their family.
Another important role social workers can play is that of intermediary. For example, if there are disagreements among family members as to what is the most appropriate way to care for the patient – such as how aggressive treatments should be – Crossroads social workers may facilitate family meetings to try to iron out differences.
That can mean working with individual family members to address family dynamics, as well as taking time to explain in greater detail the purpose of certain hospice services, such as palliative care, so that families will be able to make more informed decisions as the need for additional support becomes apparent.
“A lot of our focus is on forming relationships so that even if the initial reaction to the idea of hospice referral is ‘No’ – that they will know where to come if they need us,” said Sandra. “Eventually, it’s likely that they will be looking for support and we’ll be there to help when they need it.”
For more information about having the hospice conversation and how Crossroads can help support families throughout the process, call us at 1-888-564-3405.
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