It began one Thursday evening when I went to visit my parents. Mom had just come home from yet another unavoidable hospitalization. She was out of immediate danger but the likelihood of a relapse and perhaps a challenging surgery was weighing heavy on her mind. She looked tired, frail and was having difficulty speaking. I could sense she was in pain although she characteristically denied it.
As I sat down next to her, she looked me right in the eye and in a clear voice said, “I’m too weak to live and too strong to die. I want to go to God.” She went on to explain that she was done taking her medications, she had seen her last doctor, and she had been to the hospital for the last time. If those declarations weren’t enough she asked me, “What are you going to do?” I knew immediately what she meant. She wanted me to take control of this out-of-control situation. She was entrusting me to help her live her last days in comfort and dignity. She wanted me to ensure that her transition from this life would be as gentle on her husband, children, grandchildren, and family as possible. The best solution was to arrange for hospice services.
I was the nurse in the family and I tried my best to collaborate with mom’s private doctor. We spoke so often that we were on a first name basis for many years. Dr. Bob had grown very fond of my parents and their relationship. Our common goal was to keep mom comfortable and out of the hospital. Once my mom’s wishes were clear, my role was then to ensure that those wishes were carried out.
First, I helped my dad understand and accept her decision. Next, I call Dr. Bob and explained her request. He was very supportive. We both knew that the only treatment he could offer her was palliative. Without question, in his medical opinion, mom had less than six months to live. He made all the arrangements from his office. Finally, it was now time to call my sister. The inevitability of losing our mom to death was here. Thankfully, as in all things pertaining to our parents, we would do this together.
The next twelve days were exceptional. Mom was peaceful with her decision. She enjoyed her days with dad, her visits with her grandchildren, and her messages from family and friends. Although she refused to take any more medication, she did allow the hospice nurse to obtain an order for pain meds so she could be truly comfortable. The hospice team arranged for a priest to come to the house. She received the sacraments of Holy Communion and the Anointing of the Sick. Mom prayed her rosary daily and in a few days slipped into a coma.
For twelve days the nursing angels from hospice supported my family through the process of letting go. They immediately responded to phone calls and answered endless questions. Nurses came daily with supplies, understanding, and support. Their presence and professionalism allowed me the opportunity to be a daughter and not a nurse. On the day that mom died, it was the hospice nurse that we called first. She came right away, pronounced her and walked us through the next step.
The Value of Choice
I have been a nurse for 30 years now. For the majority of my career I practiced in critical care and emergency trauma units. I fought death constantly with knowledge, skill, medications, and technology. I had limited success. During the last 10 years however, my focus has shifted from the length of one’s life to a profound appreciation for the quality of one’s life. High tech healthcare has its place when lives need to be saved. However, death does come to us all.
Hospice services allow for the care of loved ones to take place in safe, familiar surroundings with those they love close by. It empowers the patient through their last days, offers them the respect of honoring their choices and the dignity of privacy. Hospice care assists the family during horrific moments of anger, regret, and grief that under less supportive circumstances could seriously challenge the family’s unity.
It’s important to understand that hospice is a philosophy of care rather than a specific place. It is an option for people whose life expectancy is six months or less. Treatment outcomes are based on pain and symptom relief rather than pursuing curative measures. This approach enables the person to live his/her last days with dignity, grace and support. Hospice affirms life and does not hasten or postpone death. Hospice care focuses on all aspects of physical, social, emotional, and spiritual well-being. There is no age restriction. Anyone in the last stages of life is eligible.
Hospice Care Services In the USA
- The Interdisciplinary Team: Team members include doctors, nurses, social workers, counselors, home health aides, clergy, therapists, and trained volunteers who offer support based on their areas of specialty. The team provides a comprehensive palliative plan of care aimed at relieving symptoms and giving social, emotional, and spiritual support.
- Pain Management and Control of Symptoms: The goal of these services is to help the patient to achieve comfort while allowing them to remain alert enough to make important decisions and remain in control.
- Spiritual Care: Since people differ in their spiritual needs and religious beliefs, spiritual care is individualized and never forced.
- Home Care and In-patient Care: Hospice care is typically centered in the home. However, it may be necessary to admit the patient to a hospital, extended-care facility, or a hospice in-patient facility. The hospice team can then facilitate this transfer and stay involved in the patient’s treatment. The team can also facilitate resuming in-home care when appropriate.
- Family Conferences: These conferences are facilitated by the hospice nurse or social worker. They serve to help family members stay informed about the patient’s condition and what to expect. Family conferences also provide an opportunity and safe forum to share fears, feelings, talk about expectations, and learn about the process of dying.
- Bereavement Care: Bereavement is the time of mourning following a loss. The hospice team works with surviving family members to help them through the grieving process. The team can refer family members and friends to other professional services if necessary. Bereavement follow-up services are provided for at least a year after the loved one’s death.
Hospice Care Settings
Approximately 80 to 90 percent of hospice services are provided in the home. But, it is important to know that if the patient’s lives in a nursing home, hospice services can be offered there as well. Hospitals that treat seriously ill patients often have a hospice program too. Some hospitals have a dedicated hospice unit, while others have hospice teams who visit patients in any unit. Lastly, many communities have independently owned hospice centers that feature in-patient care as well as home care hospice services. Independent hospice center can benefit individuals who do not have family caregivers.
Who is eligible for Hospice Care?
- You are eligible for hospice care if your doctor has certified your prognosis as not longer than six months. This applies to anyone of any age. Should you be blessed with improved health and no longer need hospice care, you will remain eligible to reapply for hospice care if it is necessary in the future.
- While the majority of hospice referrals are cancer related, hospice is not exclusively for cancer patients. People with terminal neuromuscular diseases or any end stage disease can also benefit greatly from the services. It is not uncommon for people with Alzheimer’s to be referred to hospice when they are in the final stages of the illness.
Are Hospice Services Expensive?
Hospice care customarily costs less than conventional care in a hospital or nursing home. This is because with home hospice, you pay only for the specific care that you need. In addition, volunteers may often provide many services at little or no cost, such as telephone support, meal preparation and running errands. Most private insurance plans, Medicare and Medicaid cover the services.
While patients usually pay out-of-pocket for any services not covered by insurance, hospice services can be provided without charge if you have limited funds. If you are unable to pay, most hospices will try to provide care using funds raised from community donations and charitable foundations.
Closing Thoughts
Hospice care truly provides for the gentlest of goodbyes. It allowed me the space and time to be able to cherish my last moments with my mom. I look back on those days in peace not pain and I will always be grateful for the last gift my mom gave me, her trust.
