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How to Support an End-of-life Patient

Supporting a loved one who is facing the end-of-life can be an emotional and challenging time. Even if family and friends have had time to prepare, no one is ever really ready.

Yet there are many ways to support your loved one and make the most of this precious time. One of the best ways is to consider hospice care. While some people resist this and think of it as giving up, the truth is that hospice offers expertise in living life with comfort and quality.

“Some people are scared of the word hospice and what that could mean,” explains Colleen Short, director of hospice for Visiting Nurse Association of Ohio. “We are more than happy to answer questions. People are scared, and we are here to listen and build trust.”

She says the best thing friends and family can do for a loved one is to listen. Encourage the patient to share their feelings and thoughts without judgement.

“To be a good listener, you must be present,” she said. “Spend time with your loved one to help them feel loved and valued.”

In addition to their team of experienced nurses, hospice provides many other resources. A social worker and a non-denominational Chaplin can check in on the patient and family and offer support. Many hospice programs also provide massage, music or art therapy to help the patient with quiet relaxation.

Short shared some additional tips and myths about hospice:

  • Tip: People often enroll in hospice too late when the patient is already actively dying or close to it. While hospice is typically for those with six months or less to live, some people live for much longer. What’s more, patients can keep their own doctors and continue most routine medications.

    “If we can start early, we can make the patient more comfortable, even though the illness will progress, the patient feels better and the family feels better,” said Short. “When we get in too late, the patient is already in pain and having uncontrolled symptoms.

    “We will do what makes the patient feel good. I have helped a patient take shower, put on makeup and curl her hair. We’ve also had patients go to the baseball game or the casino,” she added.

    Short explained that sometimes people even start to improve.

    “When a patient has less pain and is sleeping better, sometimes they can even come off hospice,” she said. “The fact is that a patient can cancel hospice ANY time. We can help with this too, when it’s appropriate.”
  • Myth: Hospice means going to a facility like a nursing home or hospital.

    “Hospice is wherever a person calls home,” explained Short. “That is where we provide care.”

    That home can be a house, apartment, assisted living or nursing home. In fact, specialized hospice facilities are typically only for acute care.
  • Tip: Don’t forget to take care of yourself. Caregiving can be draining – physically and emotionally. The best way to care for your loved one may be to care for yourself.

    “It’s ok to say, ‘I need more help,’” added Short. “You are not alone, and you don’t have to be alone.”

    Try to eat healthy, stay hydrated, and take your own medications. The hospice team can help find support that is available, like respite care, private caregivers, or bringing in more family members.

    Short says that families tend to underutilize the respite services in hospice, and five days are covered under insurance to give caregivers a break. This means that families can take their loved one for a short stay at a skilled nursing facility while they take a few days to recharge.

    “We watch for signs that a family member is struggling. How can you take care of mom if you are so exhausted,” she added.

Short reminds families that no two journeys are the same, but her team brings years of experience and compassion to the process. For more information about VNA of Ohio Hospice, please call (216) 931-1300.