This week a friend of mine, the fourth in the past 6 months, entered hospice care for advanced cancer. He and his wife needed my input and not-so-gentle push to begin this care, because, like many patients, families, and health professionals, they had misconceptions about what hospice is all about. Hospice is an excellent example of integrative health care put into practice. Its foremost priority is caring for the whole patient—physically, emotionally, and spiritually—with conventional and complementary approaches—to make each day as comfortable as possible.
The hospice movement in this country is still young, with the first hospice created in 1974, and was partly a response to the groundbreaking world bestseller by Dr. Elisabeth Kubler-Ross, On Death and Dying. Dr. Kubler-Ross interviewed over 500 dying patients for this book; their experiences and wishes led her to campaign for more compassionate, patient-centered, non-institutional end-of-life care. Through the last 40 years, the philosophy of hospice has become securely grounded in our medical system as the proper approach for patients with terminal conditions: dignified, individualized, expert medical care, pain management, and emotional and spiritual support (for both patients and loved ones). Care is usually provided in the patient’s home as opposed to a hospital, since this is the preference of the vast majority of dying people.
Barriers to hospice care still remain, despite its recognized benefits and full coverage under Medicare and private insurances. I find that lack of knowledge is still widespread, even in the medical community; up to half of patients who qualify do not obtain hospice, and may die alone or in pain, with their loved ones exhausted and missing out on the practical support it provides. And delays in signing up, which cause one-third of patients to enroll in the last week of life, leave too little time to benefit fully from hospice care. Hospice nurses feel this is one of the most difficult issues they face.
We all have difficulty contemplating and planning for the end of life. Reluctance with facing death is common in cancer patients, their loved ones, and their medical professionals, and is perhaps reinforced by the rapid growth of medical treatments and experimental clinical trials for cancer. But a continued focus solely on further treatments, when cancer is advancing despite aggressive care, may add to delays in initiating hospice. An additional barrier is the frequent misconception that choosing hospice means giving up hope. Hospice professionals consider hope an essential coping tool, and routinely ask patients what they hope for at this time. Answers often involve experiencing life and love, without pain, for as long as possible. Patients whose quality of life is enhanced by hospice may be empowered to invest their hope, energy, and time into completing emotional and spiritual goals.
I am frequently reminded of my personal experience with hospice, when my mother was dying from stage 4 lung cancer. Her condition suddenly worsened during a visit with me soon after her diagnosis. I found myself scrambling to enroll her in hospice, and felt terribly unprepared and scared, even as a “knowledgeable” M.D. My sisters and I knew she would want to die in her own bed, with her grandchildren there to say goodbye, so as her pain and weakness increased, we drove 5 hours to get her home. Unfortunately it was a weekend, and hospice could not be started until Monday. A wonderful hospice nurse unofficially and patiently instructed me by phone about the medications and assistance I may need to give, so that I could temporarily provide hospice care to mom myself, and avoid taking her to the emergency room. A pharmacist available on Sunday in the next town filled my prescriptions, dispensing morphine and other medications and supplies. Mom became too weak to urinate and her full bladder added to her pain; I placed a catheter and administered several medications, which allowed her to rest peacefully. At the time I so wished we had a hospice nurse to perform this care instead of me. Mom took her last breath at 2 am that morning, as my sister napped in bed beside her. We were not ready for the tasks of attending to her body, the funeral arrangements, and the death certificate. All would have been much easier with hospice, but as time passed I began to feel grateful that I was able to fill in, and give this final gift to my mom.
Patients who receive hospice live 3-4 weeks longer on average than nonhospice patients.1 A friend lived for two months with hospice after doctors estimated he likely had just another week left. There are several possible explanations for this increase in longevity with hospice. Shifting toward caring for, rather than curing, hospice brings physical and emotional relief to patients. Alleviating pain and maximizing comfort allows improved appetite, nutrition, and mobility, keeping the body strong as possible. Stress, anxiety, and fear, which result in sympathetic nervous system overdrive with its negative impact on natural healing processes, are reduced. Educational and emotional support helps patients process the five stages of dying described by Dr. Kubler-Ross: denial, anger, bargaining, depression, and acceptance. Practical support and emotional guidance for caregivers decrease patients’ feelings of guilt, as they gain confidence about being able to die peacefully. The chance to reflect on one’s life with less worry and pain may lead to completing unfinished goals, such as healing a relationship, traveling to a special place, or leaving a legacy of memories. During life’s last journey, hospice care gives patients and their loved ones the means and space to find greater peace and spiritual comfort.
References and Resources
- Connor SR, Pyenson B, Fitch K, et al. Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window. Journal of Pain and Symptom Management 2007; 33(3):238-46.
When Breath Becomes Air, by Paul Kalanithi. Random House, New York, 2016.