The death of former first lady Rosalynn Carter this weekend saddened many across the country and across the world.
The fact that she died so quickly after entering hospice care, while her husband — former President Jimmy Carter — has been in hospice care for nine months, also was a source of confusion.
It led to some challenging conversations about hospice care.
The biggest: When is the right time to enter hospice?
Dr. Charles Vialotti, the medical director at Villa Marie Claire hospice in Saddle River, said the timing has to do more with treatment options than end-of-life timelines.
“The ‘right time’ to refer a patient to hospice care is when the patient’s condition has declined and when there are no other effective treatment interventions that may benefit the patient,” he said.
Vialotti said physicians do not always follow this guideline. And, while they are well-meaning in doing so, their patients’ final days may not be as pleasant as they can be.
“It is unfortunate that physicians often delay referring patients to hospice care because they are either trying to protect the patient and/or family from what might be considered disappointing news about the patient’s condition or because they truly believe they may have an innovative intervention that may prolong the patient’s life,” he said.
“Patients who are referred to hospice care before they are imminent often experience a longer life and a much better quality of life than those who are referred at the very end of life’s journey.”
ROI-NJ asked Vialotti a number of questions on hospice care. Here are his thoughts, edited for space and clarity:
ROI-NJ: What do you want people with life-limiting conditions and terminal illnesses to know about hospice care?
Dr. Charles Vialotti: Hospice care is not about dying. Hospice care is about living with dignity and maintaining control over the interventions that support the patient at this most important time of life. Hospice is not about giving up on life, but it is about creating an environment of love, comfort, dignity and acceptance, which is focused on the patient and the family — not on disease-focused therapy, which can be toxic, isolating and impersonal when there is no further medical benefit from ongoing treatment.
ROI: Give us another reason to enter hospice early that we probably have not thought of.
CV: One of the most important benefits of hospice care is the support given to families to assist them with anticipatory grief. That support is most effective when a patient comes under care earlier in the course of the end-of-life journey. Another benefit to early referral is the opportunity for patients to retake control of their lives and to structure their final weeks and months in a manner that would feel and be most rewarding for them.
ROI: How do we break the end-of-life ‘taboo’? How can families initiate these conversations?
CV: The end-of-life taboo topic is a cultural phenomenon that is very difficult to overcome and which will take much more time. Conversations about end of life are only difficult if they are based on negativity and an attitude of hopelessness and abandonment. These conversations are actually viewed as supportive when the focus shifts to how much care is being offered to the patient and how much support is being offered to the family as a replacement for the now-ineffective medical interventions, which had been the prior focus during the patient’s illness.
ROI: Walk us through a patient experience at Villa Marie Claire: What can people expect, from medical care to amenities?
CV: When a patient is referred for care, a professional hospice liaison will meet with the patient and family to discuss our hospice philosophy and the many benefits which can be expected from the amenities and support staff, which are available onsite.
As the medical director at Villa Marie Claire, I’m in-residence and available 24 hours a day. On admission, a patient and family will be initially met by a registered nurse, home health aide and subsequently by the physician or physician assistant and by a team of social workers, spiritual counselors and volunteers.
Depending on the patient’s condition, the team will explore with them their desires, their fears, concerns, food preferences and their interests in various amenities, including pet therapy, equine therapy, spiritual counseling and end-of-life doula support and bereavement counseling. The patient’s family and friends are welcome to visit 24 hours a day.
Volunteers assist in bringing patients throughout the property’s common areas and comfort rooms, including the chapel, library, living room, dining room and family room. They also assist in bringing patients outside to visit our horses, to see the koi pond, swimming pool, gazebo and entertainment pavilion. Doulas also assist with legacy work when patients desire to create written or video messages to be delivered to their loved ones after they transition.
ROI: How is Villa Marie Claire helping to shift the narrative and mainstream perspectives on death and hospice care?
CV: The staff at Villa Marie Claire schedule events at many hospitals, health care facilities, community service organizations, churches, synagogues, libraries and other social events to educate and enlighten staff and the community about the importance of understanding the benefits of hospice care and the importance of creating documents such as advance directives and selecting an appropriate health care proxy.
The Villa team also invites providers to tour the facility to help increase appreciation for the elegant, warm and home-like setting that their patients and their families will experience if they choose care at Villa Marie Claire.