Editor’s note: This column is provided by the End of Life Care Partnership that has been operating here in Addison County for more than eight years. Its mission is “to create a framework for our organizations to collaborate on our common goal of providing education about dying, death and options for care.”
My mom lives in Addison County and I live out-of-state. She has recently been diagnosed with a terminal disease and I cannot be with her all the time. What should I do first?
A: Patient referrals to hospice come from their physicians. If your mom has a serious diagnosis and has not already been referred to hospice care, we recommend that you call your mom’s physician and discuss whether a referral to hospice care is appropriate. If the answer is “yes,” and the physician has had a discussion with your mom about her prognosis, the physician will send a referral to ACHHH (Addison County Home Health and Hospice). This agency will contact your mom promptly and arrange for an intake visit. A member of the hospice team will meet with your mom and work to develop a plan of care to best meet her needs. She will receive kind, skilled, compassionate care in her own home for as long as possible.
Who will provide care for my loved one while she is a hospice patient?
A: Hospice provides an interdisciplinary team that may include registered nurses, a palliative care physician, social workers, home health aides, trained volunteers and hospice chaplains. Hospice nurses provide medical care including pain and symptom management. Social workers assist patients and families prior to death and follow up at scheduled intervals with family members for the first year following death. Hospice Volunteer Services provides companionship, respite for family members and help with practical matters like shopping and transportation. The Wellspring hospice singers or other musicians from Hospice Volunteer Services visit patients at any stage and provide bedside music. Hospice chaplains assist patients and families with spiritual needs at the end-of-life. The inter-disciplinary hospice team meets on a weekly basis and reviews the care plan for each and every hospice patient, because every patient is unique. As situations change the care plan is re-assessed and updated with input from the patient, family members and the care team. It should be noted that the hospice team does not provide 24-hour direct care, and in order to stay in the home, a patient needs to have a family member or paid caregiver living with her.
My loved one lives alone but staying in the home is not practical or even possible. She requires hospice care. Are there any other community resources that can help?
A: In Addison County we are fortunate to have Addison Respite Care Home (ARCH) rooms located at both the University of Vermont Network Porter Medical Center (The Estuary) and Helen Porter Rehabilitation and Nursing facilities. These are rooms designed to accommodate people who need end-of-life care but cannot remain in their homes. Each room offers a home-like environment, hand-made furniture and quilts, pullout sleep chairs for family members and a music system. Patients who are admitted to ARCH and the Estuary rooms are cared for by employees of the hospital and nursing home as well as ACHHH nurses and hospice volunteers.
What should I do if my loved one passes away at home?
A: Do not panic! If your loved one is not under hospice care, you should call 911 and await further instructions from emergency medical and law enforcement personnel. They will assist you in having your loved one transported to the hospital emergency room where a doctor will make a pronouncement of death.
Is the process different if my loved one was being cared for by the hospice team?
A: Yes. One of the main benefits of hospice care for families is that at the time of death you only need to call Addison County Home Health and Hospice. ACHHH has an answering service that operates after normal business hours. The on-call nurse can go out at any hour to attend to your loved one at the time of death and make the necessary pronouncement. She will assist with preparing the family for next steps. If a person is being cared for by hospice and dies at home, there is no need to call 911.
Once my loved one passes away, is my relationship with the hospice team over?
A: No. Bereavement support is available from ACHHH and Hospice Volunteer Services. ACHHH provides individual bereavement counseling for family members of our hospice patients and HVS offers both individual and group bereavement support services.
This column will work if we get questions from you, our readers. We want to hear from you, what is on your mind and heart regarding this challenging issue that each of us will need to address in our lives? Send your questions to [email protected].
Sponsored by the Living with Dying — An Addison County Partnership — including ARCH, ACHHH, HVS and PMC.