How to help a loved one at the end of life

How to help a loved one at the end of life

Most people wish to die at home surrounded by loved ones. For many families, the only way for that to happen is with the help of hospice services.

To get the process started, hospice workers will help family members determine if your loved one near the end of life is eligible for services at this time, or if you can wait a little longer.

"In order to qualify for hospice, you need to have a terminal illness, which is estimated to be six months or less of life, and been approved by our medical director," explained Jacqui Ferrari, MBA, executive director, VNA of Cape Cod Hospice operation and McCarthy Care Center.

The six-month timeline is just an educated estimate. Ferrari tells families that even though they are seasoned professionals, it's impossible to tell exactly how long a person will live. For some people, it is just days. Others live months and even upwards of a year. As long as their health continues to decline, they remain eligible for hospice care.

"It's optimal to receive hospice services earlier than later in an end-of-life journey, so that the patient and family caregivers are able to benefit from the specialized support hospice offers before the final days of life."

A Wide Range of Services

Hospice provides a wide variety of services with a whole team working together to provide care. The team includes a medical director, nurse practitioners, registered nurses, RN case managers, home health aides, a medical social worker, medication coordinators, volunteers to offer respite to family members, and spiritual counselors.

The spiritual counselors continue to offer bereavement services for 13 months after the patient passes away, with check-ins and group therapy sessions for family members. It can be a valuable source of support because the family members already have a relationship with the spiritual counselors while their loved one is alive and the spiritual counselors personally knew the deceased loved one.

Identifying Goals

Typically, the way someone enters VNA Hospice services is through a referral from the patient's family member, their primary care provider or a hospital case manager. At that point, a hospice liaison meets with the patient and their family to discuss hospice services. They provide education for the family to help them decide if hospice care is right for them.

"It's a very patient-centered provision of care," Ferrari said. "We try to identify what the patient and the family's goals for what the end of life is and how they wish to spend their final days and weeks of life, and then we plan our services around that."

VNA Hospice clinical manager Savina Brierly has worked in hospice care for eight years. She explained that much of what the hospice team does is teach the family members how to care for their loved one. Even though hospice provides support and education, they are not there around the clock. That means the family is tasked with providing much of the care themselves, which can become more difficult as the patient nears the end, she said.

"Most of the time, in those days, people are bed-bound and there needs to be personal care," she said. "It's a big piece of end of life. A lot of times, families struggle with that. At that point, we would recommend, if they are not able to do it, that they hire somebody to help them in the house 24/7."

Patients at the end stage need to change position every two hours, so if the family is not able to perform that function, they need somebody who is trained for it. "We do teach them how to provide personal care but not everybody is able to do that," said Brierly.

Commonalities in Final Days

In all her years working with hospice patients, Brierly has never seen two patients die the same way. Everybody has their own journey and everybody's experience is different, she said. Still, there are some commonalities in the final days.

Patients tend to sleep more and eat less. Families are advised against trying to feed the dying patient or give them something to drink, especially if they are not awake enough to swallow. Aspiration can be a dangerous complication, Brierly said.

She always tells families that patient's hearing is the last sense to go. With that in mind, she encourages family members to talk to their loved one, even if they appear to be sleeping.

Some patients hang on longer than expected because they still feel responsible for caring for a spouse or child. In those cases, she encourages the family members to tell the patient that they will take care of the person they are leaving behind. Sometimes it helps to give the patient permission to let go, she added.

In the last days, Brierly also encourages families to keep the room or place where the dying person is located calm and relaxing. Hearing their loved ones' calm voices can be a great comfort. Soft music is also a good way to keep things tranquil.

"The role of hospice providers in the final days of life is to be there ensuring that the patient is as comfortable and peaceful as possible," said Ferrari. "That's what we're there for - to adjust medication and then monitor to make sure that the patient is passing as comfortably and supported as possible. That takes a lot of the worry away from the family in the final days so they can focus on being there and being present with their loved one."