Hospice provides ‘dignity, comfort and peace at the end of life’
November is National Hospice Awareness Month. Our High Peaks Hospice began in the Tri-Lakes almost 40 years ago with the vision and hard work of the late Dr. David Merkel. Yes, hospice is about dying — that scary, not-to-be-thought-of-but-inevitable event. Facing our death or the death of a loved one is generally the most difficult challenge of our lives. The journey is a profound experience. I also know that the most peaceful and comfortable of life’s last journeys may be the benefit of an early admission to hospice services.
How does hospice help? High Peaks Hospice is a highly qualified professional team, ready to come into your home immediately to provide comfort and peace of mind. The hospice insurance benefit is extraordinary in its reach and simplicity — without co-pays or deductibles. Hospice provides an array of services that can be tailored to meet an individual and their families’ needs. At its core are highly trained registered nurses to be your closest partner — visiting regularly, working with your own physician to obtain the maximum comfort, guiding the family on how to care for their loved one. Nurses are available 24/7 by phone to help with the rough spots at 2 a.m. and will visit in the middle of the night if needed. Our social workers help each family to clear every hurdle, from emotional to financial. Hospice offers spiritual care, volunteers to provide respite or companionship, aides or LPNs to assist with personal care, medical equipment and supplies, medicines for comfort and symptom management, the expertise of our hospice physicians working with your own doctor, and bereavement care that extends for 13 months.
Anyone with a prognosis of six months or less is eligible for hospice services. Hospice is available for any diagnosis including heart disease, renal failure, COPD, dementia, cancer and more. Anyone can call to refer a person to hospice.
In comparison to national measures, hospice services in the Tri-Lakes are severely underused which means that many, many people are not receiving the end-of-life care that they deserve. There is also an increasing trend toward late referrals, such that in the last quarter, 11% of High Peaks Hospice referrals died before they could be admitted. Of admissions, 39% died in the first week.
I worked in the Tri-Lakes area as a hospice registered nurse for 13 years, and it has been the greatest honor of my life. I know firsthand how helpful hospice can be to a family who is facing the death of a loved one.
I have rushed into homes of imminently dying persons and provided all manner of equipment, services and medications for last-minute comforts, and watched the person die within hours or a few days with the family in shock and distress.
I have also served patients with terminal illnesses for weeks and months and witnessed not only the physical comfort but the peace that comes with the acceptance that is gained over time and with support. The peace that comes when patients are not spending their last weeks traveling to medical facilities or clinging to unrealistic hopes, but are at home with their family and friends — sharing memories, resolving conflicts, giving to each other in new ways, maybe crossing something off their bucket list. There is time to say “thank you,” “I love you,” “I am sorry,” “I forgive you” and “goodbye.” There is time to just be in the present with those we love. There is laughter, and there are tears.
Persons with late-stage illness may feel they are coping OK at home and avoid hospice because they fear it means they are admitting defeat, or that a hospice admission means they will die very soon. Then some crisis happens, and they are left to seek help in emergency departments, with hospital admissions and rushed efforts to get them back home to die with hospice. Hospice works very hard to provide this last-minute care in the best way possible. Accessing hospice services earlier, however, can avoid much suffering and emergency care. Earlier hospice admission improves the quality of one’s days and at times even the quantity of days, due to the accessibility of care and prompt treatment of symptoms. Remember that a full six-month prognosis makes one eligible for hospice care.
Death is a difficult subject for doctors, families and patients. Where do we start? Learn what you can about your illness, the prognosis, treatment options, side effects and likely outcomes so you can make decisions consistent with your values. Ask your doctor to counsel you on your wishes for medical care, and complete Advanced Directives.
Some signs that indicate that you might benefit by meeting with a hospice representative include: frequent hospitalizations, increased weakness, the decreased ability to function, progressive unintentional weight loss/gain, increased oxygen dependency, dementia with the inability to communicate, desire to stop treatment, trouble swallowing and a desire to focus on comfort measures.
When the illness is unrelenting and the prognosis is limited, there is much relief in partnering with hospice — having a nurse in your home coordinating care with your doctor, focused on your comfort. When the options become limited, hospice can give you the option of focusing on the rest of your life.
As a hospice nurse, I have seen many people die. I have seen eyes light up and broad smiles at the last breath. I have seen peace descend like a miracle from the touch of a priest’s hand. I have seen tears of love. I have seen deep family grievances set aside and new bridges built. I have seen a lot of laughter. I have seen sons so grateful for the training to reach beyond their comfort zone to provide intimate care for a parent. I have seen family reunions, vacations, parties. I have seen small children snuggling in the bed with their dying grandparent.
Hospice is here for you — “dignity, comfort and peace at the end of life.”
Peggy Wiltberger lives in Saranac Lake and is board president of High Peaks Hospice.