This is response to the front page article “Woman’s painful 6 month decline...” Not one time in the article was there mention of hospice care or a palliative care consult with the family. There was plenty of blame for the hospitals and doctors being greedy hucksters, deliberately extending the patient’s life for their own benefit despite her suffering and her family’s suffering.
There are other options out there. Hospice and palliative care can be provided. Medicare does not provide for overt palliative care. It does provide hospice care but that has become difficult over the past year as different agencies breathe down our necks making the paperwork we provide more important than patient care.
A few years ago, I jokingly said the patients were getting in the way of the paperwork. I am not joking anymore. The amount of redundant paperwork is something to behold. Not one time in the article did it mention someone going to this family and just talking with them. Not a five minute conversation where the doctor says “it’s time.”
I am talking about the conversation that may take several hours and occur over several days. Hospice care and/or palliative care could have prepared this family. A hospice Social worker and chaplain could have been an invaluable tool to help this family explore their thoughts and feelings. They help families come to grips with what their loved one would have wanted. A volunteer can be a supportive ear.
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I got the impression from the story that this was a loving, close family that loved their mother and wanted only the best for her. Instead, they got the technical side of medicine. No education on end of life care. No support after their mother died to help them cope with the decisions they had made.
Hospice provides bereavement care after the patient has died. If you say hospice, many people think that doctors have given up and the patient and is put in a corner to die and given morphine to help them out the door. If palliative care could be included and that term used and no six-month cap with the government demanding there be obvious signs of the person dying, billions of dollars could be saved in the last years of an older persons life.
Families could be educated on what to expect, given their options, and the possible consequences of their choices. They would have a nurse available 24/7 to come to their home to evaluate the situation and possibly keep them out of the emergency room or from being hospitalized.
Education, support, concern, knowledge and compassion is provided by hospice. This does not come in a 30-minute talk. This is built over time as a relationship develops. I will admit, there are some families that no matter how much education and support is provided they will still opt for “save mama at all cost,” but usually there are other issues at play and nobody will change them. After 13 years of hospice service I have found these families to be few.
If you have a family member who resembles the lady in the article perhaps it is time for you to ask your doctor about hospice care. Let a nurse come and talk with you. Most hospice nurses that have been in service for any length of time believe this is a calling. We want to help you get through this difficult time.
Susie White-McInvale, RN, CHPN, is a resident of Perry.