Hospice care brings comfort and dignity to dying. As frightening and difficult as illness and death can be, ultimately hospice affirms and enriches life, care, love, and the unique journey of each of us.
For Diane Congello-Brandes, calling on Hudson Valley Hospice in 2020 for care of jer 96-year-old mother, Frieda Congello, during her final days created comfort for her parent and a level of care and expertise Diane had scarcely been aware existed.
In my own sister Joanne DeMark's final weeks before her passing at the age of 75 last spring, our family witnessed how a hospice in Washington State helped keep her comfortable, imparted vital information on the process, and gave an incredible range of support to her and to her dear ones -- more than we could have envisioned.
Hospice not only provided an excellent healthcare facility staff, but also bridged that space across the country. These caregivers and Joanne's loved ones worked as a team.
For more than 40 years, Hudson Valley Hospice has given a spectrum of compassionate care and support services to individuals and families in Ulster and Dutchess counties. This private nonprofit agency has contracts with 14 nursing homes and the area hospitals. It delivers services to patients who are at home and to those who are homeless.
Today, Hudson Valley Hospice has more than 600 patients on its service every day.
Last year marked a major milestone, the opening of a state-of-the-art, home in Hyde Park for end-of-life care. The first free-standing hospice facility in Ulster and Dutchess counties, the $10-million Hudson Valley Hospice House has 14 private rooms for general inpatient care, respite care and home care. It is the first free-standing hospice facility in Ulster and Dutchess counties.
Each room has access to the facility's meditative garden.
An interdisciplinary team
To Lisa Wilson, the range of compassionate care and family support services means "meeting people where they are" in all aspects and with the many difficult challenges faced each day with a life-limiting illness. Hospice care is for people whose life expectancy is six months or less. When treatments to cure are no longer an option, and the aim of care becomes to help sustain quality of life, comfort, and symptom management for whatever time remains. Hospice aids the patient and loved ones in management and understanding.
Hudson Valley Hospice's services include pain and symptom management, treatments geared toward comfort and quality of life, trained nursing and social-work staff, spiritual care, family support (for example, home health aides, volunteers, and end-of-life doulas), grief support and counseling, music therapy, art therapy, pet therapy, and other complementary supports that can help sustain quality of life and comfort.
Wilson, executive director of the Hudson Valley Hospice Foundation and in charge of marketing for the hospice, emphasizes that patients and their dear ones should not hesitate to reach out to Hudson Valley Hospice to explore what hospice care is and does. "There are no bad questions," she said, "and it doesn't mean you're ready yet," Many families say that they wish they had called Hudson Valley Hospice sooner.
Hospice care is a benefit provided under Medicare Part A, Medicaid, Veterans Administration benefits, and most commercial insurance plans.
Each person's and family circle's circumstances and needs vary, of course. However, basically, an interdisciplinary team comes together in each case of end-of-life care.
A crucial outcome of hospice care, Wilson said, is reducing stress on the patient's body and mind. Layers of support entail everything from pain relief and home healthcare to visits with a chaplain, music therapy, and aid with day-to-day tasks from trained volunteers.
Individual situations
With her mother's hospice care, Congello-Brandes learned a great deal. Her mother Frieda was diagnosed with MDS (myelodysplastic syndromes), a disease in which the bone marrow does not produce enough healthy blood cells. Her mother did not want advanced treatment. As time went on, she began experiencing weakness and labored breathing. With Diane taking care of her mother 24/7, the doctor recommended contacting Hudson Valley Hospice.
Hospice was immensely helpful in her mother's final days. Her mother had fallen out of bed once, so the hospice personnel arranged to have a hospital bed set up in Congello-Brandes' home, ensuring her mother was comfortable and safe upstairs.
During home visits, hospice aides could relieve Diane in taking care of her mother. The nurses explained what was happening with her mother's decline. They helped guide Diane to assist family who lived at a distance to make the trip to see Frieda -- something that meant a great deal to her mother.
When our family engaged a hospice on behalf of my sister, we found that the easy-to-understand way that the staff communicated, the in-depth expertise, day-to-day support, and various services fundamental to my sister's care in the weeks before she passed.
A social worker coordinated the nursing and complementary services. A nurse made frequent visits to my sister and worked with the team concerning the medications she was receiving and help with the pain she was suffering. A chaplain made visits to Joanne at her facility.
Meeting people where they are
Communication was the key. The nurse communicated to our family about her condition, the medications she was receiving, and the assessment of their effectiveness. Help from the hospice brought us great peace in those final weeks of my sister's life.
We were almost taken aback by just how much and how varied the ways that the hospice sought to support my sister and her dear ones. This hospice care provided a going beyond that was frankly awe-inspiring. Many patients and families are still unfamiliar with what hospice offers and its range of care and support.
In Wilson's view, for hospice care to truly bring compassionate care and dignity, "It's meeting people where they are." That can mean hospice care being present everywhere from skilled nursing facilities and hospitals to people's homes and homeless shelters.
The patient's and family's needs can be many. Wilson spoke of a family in which a young professor was ill and facing the end of his life. The family had three children of elementary-school age. The hospice team worked to maintain his quality of life and support the family by taking care of funeral arrangements and completing the patient's paperwork for insurance and related matters.
Veterans are an important population of Hudson Valley Hospice outreach services. The program is a Level 5 hospice provider, the highest level achievable in the We Honor Veterans Program, a collaboration of the National Hospice and Palliative Care Organization (NHPCO) and the Department of Veterans Affairs (VA).
The program seeks to raise awareness among veterans of access to hospice and palliative care. With the last remaining veterans of the World War II generation, who are ages 90-plus, "we pin them for their service one last time." Some veterans are in their own homes while others have ended up in homeless shelters. For the vets (as well as for others receiving hospice care), maintaining quality of life is comprised not only of ensuring pain relief and managing symptoms but also taking care of basic day-to-day needs such as clean clothes and a a good supply of foods.
Grief support, too
For those who have lost a loved one, hospice care does not end with that person's passing. Hudson Valley Hospice offers grief support, with options for individualized counseling services, support groups, and/or workshops. The service is through tailored programs to meet the needs of adults, teens, and children, and is available for 15 months. In a children's grief support group, Wilson recalls, an eight-year-old was asked, "What made you come?"
The child replied, "I came because my friend said it would help and told him, 'It helped me.'"
For those who work in hospice care, it's a calling. As Michael Kaminski, president/CEO of Hudson Valley Hospice, noted when the Hudson Valley Hospice House opened last year, "We who work in hospice are privileged to touch eternity every day. We are honored to meet with and care for people and their families at the most vulnerable and serious time in their final journey."
Four years later, Diane Congello-Brandes remains grateful for the care of her mother and the support Diane received from Hudson Valley Hospice. With her mother gravely ill, she says, "If it wasn't for [hospice], I would have been sitting on my hands saying, 'What am I supposed to do?'"As she concluded, hospice "is so amazing and so invaluable for your own peace of mind."