Working Caregiver- Caregiver Articles
Dying in pain and alone are the concerns I hear consistently; the memories of a loved one suffering through a difficult death are often the reasons behind these fears.
Fear of Dying.. adressing a piece of it... Palliative Care
When we hear of someone dying, how is it described? How many of us are invited into the folds of a family to help care for someone as she dies? How many times do we have the honor of witnessing someone die? Was the person comfortable (successful palliative care) and peaceful or suffering (unsuccessful palliative care) during the days/weeks/months leading up to her death?
Most people I speak with tell me their biggest fear involves the process of dying, no matter what their beliefs might be regarding what happens after death. Dying in pain and alone are the concerns I hear consistently; the memories of a loved one suffering through a difficult death are often the reasons behind these fears. When people talk about their experiences with the death of a loved one, most includes the time before hospice service was begun, hospice care is usually begun when symptoms are unmanageable.
There is widespread agreement among experts that families enroll in hospice too late. In essence, what they are saying is the quality of life for those we serve (terminally ill people and their families) could be improved by beginning this type of care sooner. Palliative care may be given at any time during illness, from diagnosis on; it is not just for people in hospice. When the continuum of care from diagnosis through death considers palliative treatments as high a priority as curative treatments, when it is implemented concurrently and successfully with cure-directed care, then the bridge from seeking cure to letting go of that seeking will be smoother. Experiencing this type of care will likely change our view of the dying process.
Families agree they receive greater benefits from earlier entry into hospice (1). The median length of stay for a person in hospice is 26 days (with over 50% of people dying before 14 days) (2). As we would expect, the person has not responded to cure-directed treatment long before then. Too many people are suffering with poorly controlled symptoms upon entering a hospice program, with the incidence of pain ranging from 50-80% (3). As a hospice case manager, I often witnessed similar situations, and it broke my heart. It does not have to be this way. If and when we decide to enter hospice, it does not have to be a crisis driven decision due to poorly controlled symptoms, as is so often the case now. No matter what we choose to do, if our symptoms are under control, that is the way it should be; if not, we need to consider adding a palliative care physician to our health care team as soon as possible.
Palliative care (treatment addressing the cause of physical or emotional pain, administered from diagnosis on) has come a long way in the past 20 years. In the last 5 years alone, hospital based palliative care programs have increased 96%, from 632 national programs to 1240 (4). Most importantly, palliative care has been acknowledged as the specialty it is, the same as neurology, cardiology or oncology. In June 2006, the American Medical Association House of Delegates approved the establishment of the Specialty Section Council on Pain and Palliative Medicine (5); there was no opposition. The sponsors of the bill were: The American Academy of Pain Medicine, The American Academy of Hospice and Palliative Medicine, The American Society of Addiction Medicine, The American Society of Clinical Oncology, The International Spine Intervention Society and The North American Spine Society.
In my own experience, after my mother's diagnosis of cancer, she asked me "..what will it be like?" I told her that her sleepiness would be progressive and one day she would just fall asleep and not wake up. After her pain was under control and prior to her death, she asked, "..will it hurt?" I told her no, because if she did hurt, there were additional medicines to help ease the pain, palliative care. Experiencing her own symptoms being very well managed from cholangiocarcinoma and believing me that a peaceful death was possible, she seemed to not be afraid of dying anymore; she didn't ask me any more questions about it.
What she did do was focus on her financial affairs and making her wishes known about the things that were important to her. We all knew she did not want to die; the 4 weeks from her diagnosis to her death was emotionally excruciating. I was with her every second, lying around wherever she was; she didn't talk much at all. She would look at me now and then and I could feel that she felt safe. She would sigh and close her eyes. Two days before her death, and after she had been unconscious for over 24 hours, she sat straight up in the bed. With her eyes still closed she said, "I'm dying and I don’t like it." She said it in 'that' tone - she was angry.
Does palliative care make it all nice? Of course it doesn't. What it does is provide the base from which we can deal with what is important to us, instead of focusing on uncertainty and pain. It provides dignity and quality of life at a time when we need it most. I have cared for hundreds of people and their families through this process, and based on my experiences, I believe I will have a peaceful death. Should I be diagnosed with a life-limiting illness, I may or may not handle it gracefully...and...I will only accept the best palliative care available because I know it works - my hope is you will do the same.
In peace,
Deanna Cochran, RN
Quality of Life Care, LLC
http://www.qualityoflifecare.com
