Left to right: Carrie Sargent, Executive Assistant Dr. Joan MacDonald, DNP, MSN, RN President/CEO Helios Care Kathyrn Dailey, Director of Development & Marketing. Photo by Lorcan Otway.
ONEONTA — Joan MacDonald, DNP, MSN, RN, is the President/CEO of Helios Care serving Otsego, Schoharie and Delaware counties. The organisation was created to serve the Catskill community in 1981, originally called Catskill Area Hospice and Palliative Care. Today, the mission statement of this not for profit says a great deal, "Making life easier for patients and families facing serious illness or at end of life by providing choices, dignity and compassionate care."
Often, in the United States, the process of dying and bereavement is seen as a subject to be avoided. This can add to the all too common kind of care which removes autonomy and takes the person from familiar surroundings. This is a time when a person wants to face their most challenging issues surrounded by family and friends. They need helpers who are respectful of a person's dignity and wishes.Helios Care encourages young and healthy people to become comfortable with planning to live the best life possible when seriously ill or facing death. After all, there should be comfort in knowing that a plan is in place which removes the worry of uncertainty.
Joan is a nurse who worked with the Bassett Health Care network for over twenty years. "I think I developed my love of end of life care because I saw really good deaths and I saw really horrible deaths. I wanted to make sure that the families of the loved ones who are losing someone, are educated on what to expect when their loved one is passing. And make sure that we provide them comfort." Her avocation is to see that a person dies with dignity, no pain and with comfort. "There is nothing worse than watching your loved one suffer in pain and anxiety."
Joan continued her education in nursing, obtaining a doctorate in that field. She holds fast to the belief that nursing is a lifelong dedication to learning about service to the needs of those in her care. The patients are at a time of life when they need her growing understanding and knowledge. She studied end of life care, hospice care, and palliative care. Her goal was to be a hospice nurse. However she found herself in an administrative role so that she could provide education as well as help to families in three Catskill counties.
Most of us hear the term "Palliative care" and Hospice care," and have a general idea of what that entails. There is an important difference. Palliative care addresses the symptoms of serious illnesses such as cancer or heart disease. It has the goal of relieving stress and pain, improving comfort or managing the illness. It may be a matter of living with an illness during the cure, or treatment appropriate for the best life with the incurable but manageable illness.
Hospice care, on the other hand, is palliative care in the last stage of life. It not only involves the physical needs of a patient, but the emotional and spiritual needs as well as that of the family.
"Most patients want to die at home, where they're comfortable. and their family is surrounding them." This is not always possible. Some of those whom Helios Care serves are in nursing homes, as they may not have anybody at home to take care of them. When the nursing home is their home,Helios cares for them there. The preferable treatment is at home, be it their family home or a nursing home. If there is an exigency which requires a patient to be in the hospital, they will serve the patient there. The goal, however, is to honor the patient's wishes, and the majority of them wish to spend their last days at their home.
Helios Care has been able to accomplish a remarkable achievement. Many of us have found that in rural America, in general, there is a shortage of healthcare delivery systems. Urban families mostly have MDs as a primary health care representative, while rural families have Nurse Practitioners or Physicians Assistants in that role. Helios Care has a team of physicians and social workers, and even pharmacies."Any type of medicine we need to keep our patients comfortable is at our fingertips." Their doctors are experts in hospice and palliative care and work only for Helios Care.
It is a needed and daunting life's work. In the United States, NY State ranks fiftieth in the least use of hospice care. "What does that mean? New Yorkers don't like to talk about death and dying." A recent law just signed by the governor may inspire those discussions, those conversations about end of life issues. When the law goes into effect on August 6, 2026 the Medical Aid in Dying law will allow anyone of any age who is legally competent and facing a terminal, life ending illness to request help in ending their suffering aided by a doctor. We can be sure that this will lead to news stories and discussion by families on the subject of final choices. This may help bring the various choices to public awareness in New York, including hospice and palliative care. Joan has hopes that this will lead more New Yorkers to finding out about and using the hospice benefit that Medicare and Medicaid offer to all New Yorkers who are entitled to receive that help.
Helios does not only serve the patient in their final days They help the family with both planning for the future and grief counseling for survivors. They have day bereavement camps, "Forgetmenot Camps," for children who have suffered the loss of a family member. They have programs in schools and colleges to "know your rights" and know about the advantages of planning for end of life care choices. The ages in the camps run from four or five to teens, and there are programs for young adults who have suffered bereavement. So, Helios provides care for people of all ages to deal with this inevitability.
As Joan Macdonald says, "People work in hospice because it is a calling. It is not for the money or glory, It's what is in their heart. It is not [work] for everybody. Those who work here take a lot of pride in making sure their patients are taken care of." This care is affordable to most, as their website states, "Our home hospice services are typically covered in full by Medicare, Medicaid and most insurance providers. Financial assistance may also be available if needed."
