Early hospice care helps
High Peaks Hospice, begun by Dr. Dave and Ann Merkel, has provided end of life care in the Tri-Lakes for over 35 years. 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. It is a profound experience. I also know that the most peaceful and comfortable of deaths may be the benefit of an early admission to hospice services.
How does hospice help? Hospice offers direct services with their knowledgeable staff, most often provided in your home. Covered by Medicare and most private insurances without co-pays or deductibles, it addresses not only the physical comfort of people with terminal illness, but also their psycho-social and spiritual needs, and those of the family. The hospice team includes medical directors, registered professional nurses, social workers, volunteers, chaplains, bereavement counselors, licensed practical nurses and aides. Hospice provides medicines, equipment, supplies, some personal care, respite and training to assist the family in caring for their loved one. The hospice team works with the patient’s own doctor. After death, bereavement services are available for everyone grieving the loss.
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.
The High Peaks Hospice service area covers 5,400 square miles and includes all of Warren and Essex, southern Franklin and parts of Washington, St. Lawrence and Hamilton counties. It maintains three clinical offices located in Saranac Lake, Mineville and Queensbury. Hospice provides support 24 hours a day. This means that if a patient requires immediate assistance at 2 a.m., a nurse may drive two hours one way to make that visit. Health insurance provides no additional reimbursement to cover the travel expenses related to serving a large area. In addition, despite the size of the High Peaks Hospice service area, the population is small. The relatively low number of patients served by hospice at any one point in time means that the total insurance income generated is less than is needed to cover the extensive services that hospice provides.
Hospice has always relied on fundraising to try to meet the gap that insurance reimbursements leave, and the Tri-Lakes area has always been very generous. While donations are important, taking the step to utilize hospice when appropriate and earlier is the gift I would like to suggest.
Hospice services are severely underused. This is somewhat a national trend. Locally, however, it places the sustainability of a rural hospice program in jeopardy, and most importantly it means that many, many people are not receiving the end-of-life care that they deserve.
I worked in the Tri-Lakes area as a hospice registered nurse for 13 years, and I am now privileged to serve on High Peaks Hospice’s board of directors. Working in hospice 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.
Over 30 percent of High Peaks Hospice patients die in less than seven days on service. Last quarter, 20 hospice referrals were made so late that they died before they could be admitted. This is a strain on everyone. 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 six-month prognosis makes one eligible for hospice care.
Death is a difficult subject for doctors, families and patients. I have been in homes where the spouse and patient separately took me aside and encouraged me not to speak of death in front of their loved one, as if each didn’t know. Where do we start? Say the “d” word. It is hard, but once acknowledged, you can begin to live in the now. 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 advance directives. I suggest watching the video “Being Mortal,” which can be seen on PBS “Frontline” at http://www.pbs.org/video/frontline-being-mortal. And I recommend that if you, your loved one or your patient is facing an end-stage illness, call hospice early to learn how they can help.
Peggy Wiltberger lives in Saranac Lake.