Before I became involved with hospice, I did not fully understand or appreciate what it was or the services that could be provided. As a matter of fact, when I heard that a friend or acquaintance was “on hospice” my first reaction was “I am so sorry”. I immediately assumed that that individual was very close to death, likely a few days away. I envisioned a heavily sedated cancer patient in a hospital bed with family members crying and saying their goodbyes. I was a nurse with several years of experience, but had limited experience with hospice at that time. It seemed like a very bleak area of health care.
All that changed about 10 years ago when a close friend was diagnosed with end stage pancreatic cancer. As her condition declined she was referred to hospice by her physician, but she “didn’t want to give up” and “wasn’t ready to die” and so she refused hospice care. She lived with weeks of poorly controlled symptoms and became weaker and sicker. She couldn’t eat due to constant nausea. She was frequently in terrible pain and became very depressed. Her family was overwhelmed with her care and were emotionally and physically distraught. After a trip to the emergency room for a pain crisis and breathing difficulties, my friend spoke with a physician who strongly encouraged her to consider hospice in order to “improve the quality of her remaining life”. Exhausted, she agreed.
A week later, I went to see her. The transformation was remarkable. Now that her pain and breathing difficulties were under control, she was able to interact positively with her family. With the support of the hospice nurses, her children and husband were able to medicate her to help control her symptoms without making her excessively drowsy. She could tolerate eating, gained some strength, and slept better at night. The nurses and aides instructed the family on bathing, turning and positioning her. She had a hospital bed with an air mattress, a bedside commode, oxygen, a shower chair….all furnished by hospice. The social worker had provided resources to assist with utility bills to offset some of the mounting expenses they had incurred. Both she and her family agreed that knowing help was “a phone call away” at any hour of the day or night was a relief to them all. She lived for four months and died peacefully surrounded by her family.
I still felt incredible sadness at having to lose her, but what I found out through that experience is that “HOSPICE” is a source of relief and comfort. It is a philosophy of care. It’s about shifting the focus from treatment of a patient’s illness with the goal of cure, to recognizing that the dying process is a part of the normal process of living and enhancing the quality of remaining life. Hospice ascribes to the belief that every human being has the right to die free of pain and other distress. Once that approach is taken, then death is viewed not as something to be feared, hastened, or postponed, but as a natural part of the growth and development of every living thing.
While Hospice is frequently associated with cancer, there are many chronic illnesses and conditions in which a patient is considered to be terminal with a limited life expectancy. Patients with end stage dementia, terminal neurological conditions, and evidence of decline in their health status due to long term debilitating chronic diseases may also be eligible to take advantage of hospice. For patients who qualify, Medicare and many other insurance plans will pay for comprehensive end-of-life care delivered in the patient’s home, whether that home is a residence, assisted living facility, or nursing home.
Sometimes patients and families worry that by electing hospice they are ‘giving up’, but hospice offers incredible support in situations where continuing aggressive therapy will not change the outcome and may decrease the quality of life. Certainly, this type of support does not have to wait until the last few weeks or days of life. It can be embraced as soon as that decision is reached. When hospice is chosen as the last resort, or elected when the patient is actively dying, then there is very little that can be done except to ensure a comfortable death and support the family as they grieve. Those are the situations in which the prophesy is fulfilled that “once a person starts hospice then they die very soon”.
When hospice is elected “sooner” in the course of the terminal illness, then studies show that individuals actually live longer, because their distressing symptoms are controlled. There is no requirement that the hospice patient be bedbound or homebound. In fact, hospice patients are encouraged to do as much as possible for as long as possible. A patient is not locked into the benefit once he or she elects it. If there is a substantial improvement, or the patient later decides to pursue aggressive therapy, it’s possible to revoke the benefit. Patients can also re-elect hospice at a later date if they so choose.
When people ask me what I do and I tell them that I work with hospice, they will often look at me and say, “That must be so difficult. What a sad job”. And my response is always, “It is the most rewarding thing I have ever done as a nurse and as a human being”. When I went into nursing thirty years ago I wanted to help people, make them feel better, help them problem solve, and make a difference. As a hospice nurse and the administrator for a wonderful hospice agency, I have all of the tools to do that. Now, when I hear “HOSPICE” I don’t think “death”. I think “what a gift”!
About the author:
I am Susie Compton, a wife, mother registered nurse and the Administrator for Lincoln Medical Home Health and Hospice. I have been a nurse for more than 30 years and I have held the administrator title for the past 7 years. Most of my nursing career was spent in intensive care and working with neurosurgical and stroke patients. I was a nursing instructor and Assistant Professor of Nursing at Motlow College prior to working with Lincoln Health System. I am currently certified in Hospice and Palliative Care Administration.
Working in home care is very eye opening! Caring for a patient in the controlled environment of a hospital is so different from providing care “where the patient lives”. It requires a great deal of organization, flexibility, and a sense of humor! I have a very dedicated and compassionate staff who provide excellent care of our patients.
My husband John and I have lived in Fayetteville for 18 years. He is a Certified Registered Nurse Anesthetist and a wonderful cook! We have two grown children, Callie, who works and lives in Nashville, TN and Barrett, who serves in the US Navy and is currently on deployment on the USS Lake Champlain. When not working I love to walk, work in my yard, read, write, sing and play with my cats!