Hope is defined in the American Heritage Dictionary as, “To wish for (something) with expectation.” This definition works for most of our life; we hope for, love, success family, travel and wonderful experiences. Hope when we are terminally ill is still hope, but the definition does change. Hope can be defined so many ways: “I hope to see my granddaughter’s graduation next month,” “I’m hoping to see my sister this fall.” “I hope I will be here for Christmas, the family is gathering for the first time in 20 years.” I hope I can go all day without pain.” Hope can be defined as hospice care with an enhanced quality of life.
What if, for the last months or even years, your focus has been just to survive? You’ve struggled with unimaginable symptoms, medication, trips to the doctor, ER, surgery, chemotherapy, radiation, drug reactions. It’s been exhausting and certainly a full time job. Again you find yourself in the doctor’s office, tired of this whole ordeal, hoping that this time your doctor has a solution, some semblance of hope.
What if your doctor could suggest a plan to recover your dignity and offer you an opportunity to have quality of life and plan your future? Would you take it? Your life could be limited, but it is your life after all. What if you no longer had to worry about managing the disease that was limiting your life?
The first step is to ask for the truth about your illness. Clearly have your health care professional explain what is happening in your body. It’s important to understand what’s occurring and what your options are. Also talk to your health professional about what you would like the end of YOUR life to look like.
Most of us want the truth. Yes, talking about death can be difficult, but we do have the right to know what is happening to our body and if we have a life limiting diagnosis. Conscious, educated self determination is a powerful force. You can take back your power.
This year thousands of people will unnecessarily suffer while dying. Many will die in hospitals and some will die in terrible pain unprepared for death. Unfortunately they will not receive the support available to them through a hospice program. Fewer than one in four deaths in the United States occur among patients enrolled in hospice care. There are many reasons for this.
Some physicians have not had the “end of life” discussions with their patient. This means a frank discussion with your health care provider about what you want at the end of your life. Questions like: Do I want to be resuscitated? Do I want a feeding tube? Do I want to be given all and any treatments that will prolong my life, even if it just prolongs the enviable? Do I want to be kept comfortable and let nature to take its course?
How aggressive are you willing to get with your treatments? The discussion with your health care professional should be scheduled while you can still make informed decisions. This is about your life and what you want your life to look like at the end. The decisions you make should be shared with your loved ones so that they are clear about your plans too. It is a provocative conversation, but a recent study http://jama.ama-assn.org/content/300/14/1665.short , “found that clear end-of-life discussions are associated with earlier hospice referrals, less aggressive medical care near death and better quality of life. Aggressive end of life care was found to be associated with diminished patient quality of life and slower bereavement adjustment.”
Sometimes families do not want anyone, including their physician, to discuss end of life care options with their loved ones because they feel it will dash their hope of recovery. Many families are in denial that their loved one will die and they urge the patient to continue treatments even though their quality of life continues to be severely compromised. This kind of situation becomes more about the families’ needs, rather than the patients’ comfort.
No one wants to suffer and most of us don’t want to die, but the truth is, no one gets out of here alive. Most of the time your doctor is doing everything possible to provide solutions, but your doctor cannot oversee your needs and control your symptoms, 24 hours a day, seven days a week. If your doctor believes that you have a life-limiting illness of six months or less, and you are having difficulty controlling your symptoms, there is an answer to this dilemma; the hospice team. Fortunately with education, communication and understanding, most suffering can be avoided or considerably reduced and patients’ and families’ lives can be enhanced.
Hospice is a service that provides not only palliative (comfort) care for the patient, but also emotional and spiritual support to everyone involved. Here are a few benefits hospice can provide:
*Hospice is covered by Medicare, Medi-cal, Medicaid and most private insurance plans. It is available to everyone with a diagnosis of 6 months or less. Some hospice agencies will serve uninsured patients at no charge as well.
*Hospice is available to people of any age, race, religion or illness.
*The purpose of hospice is to effectively provide comfort care to terminally ill patients and their families. The goal of hospice is to maximize patients’ quality of life as they prepare for their death.
*Hospice is available 24 hours a day, 7 days a week.
*Hospice care is provided at home and in care facilities. This means that all equipment, supplies and medication specific to their hospice diagnosis and needs is provided.
**Hospice patients live longer with better control of symptoms than non-hospice patients. http://www.nhpco.org/files/public/JPSM/march-2007-article.pdf
*Patients and their families are involved with their own self determination. Autonomy is supported and encouraged.
*Bereavement services are available for 13 months after death.
Joanne Harvey MSW, is a medical social worker with years of experience supporting terminally ill patients and their families. She is also a consultant for caregivers dealing with difficult situations. She encourages embracing life everyday and strongly supports self determination. She is the author of 'Dying to Live: Embracing the Journey', www.dyingtolivestories.com. It was written to reduce fear and educate about the hospice experience. 'Dying to Live' skillfully weaves true life accounts about love, challenges and healing with terminally ill patients. Harvey includes practical advice and resources available to those who may need more assistance. You can reach her at (530) 459-5464