(Snippets from the frontline)
Actively dying
A few years ago, four of my patients died within 6 months. All were in their 90s, widowed, lived in their home, and chose their healthcare route though palliative care. They had signed advanced directives, designated power of attorney for health decisions, and were DNR (do not resuscitate).
When all simple treatable problems were eliminated, and the patient showed signs of actively dying, they went on hospice care.
Most experienced frontline doctors and nurses know the signs of a patient at end-of-life: Weakness, voice diminishing, mentation declining, blood pressure lowering, and pulse reflexively increasing. Toward the end they may be semi-conscious, barely responding, and their respirations could increase irregularly. There might be unintentional body movements, mouth breathing, gurgling, and changes in skin color with cool limbs.
Hospice provides medication to control any suspected pain or discomfort, untoward bodily movement, and body secretions.
Focus is insuring the patient is not suffering.
Continual discussion and reassurance with loved ones was maintained for these four patients, and clergy came to their bedside.
None of these patients were in discomfort and each died in less than a week at home, surrounded by family.
Hospice end-of-life should be peaceful.
Gene Uzawa Dorio, M.D.
Even though I am a doctor, I had to push hard to get the hospice folks to actually come to the house after we signed him up. And we got services for him from the hospice only because I knew what they covered and I insisted. Even though he was already on high dose morphine for bone metastases from prostate cancer, the medical supervision of his pain continued to go through me at the bedside, as I was afraid it would otherwise be too little too late. This was all years ago but my experience is that this hasn’t changed much—I waited to call hospice until the last month of my Dad’s life, because I knew the services they had to offer, and it still was, initially, like pulling teeth to get them. While there are wonderful hospice nurses and aides out there, they are often strictly limited in how often they can come by due to large caseloads. Unfortunately, encouraging an early enrollment in hospice is too often about making a profit before a lot of services are needed. And often, hospice will not be a substitute or enough relief to spare loving family-although considerable help is possible from hospice personnel, it is not always offered in an appropriate or timely fashion. I have heard too many stories of over-medication in patients whose comfort neefs were complex, or alternatively too little too late. In practice, I got too many calls ftom the hospice MD (to the PCP) about using the cheaper medication despite stability and comfort on the current one.
I had teo husbands who died in hospice at home. With the first husband, I had a battle with his doctor who said I was throwing in the towel. Instead, he wanted to put him on dyalisis (this after 3 years of aggressive treatment for multiple myeloma). I insisted on hospice and got a terrible group, fired them, got a good one.
WIth my second husband I knew when to call and who – big difference.
P.S. My first husband died within 4 days of my call to the doctor.
Thanks for this valuable service.
As a hospice APN Ifind it sad that you wait to refer your patients are actively dying. hospice is about so much more than “ providing medication to control suspected pain or discomfort, untoward body movement, and body secretations.It is a philosophy of care that focuses on attending to a persons physical,emotional and spiritual needs at the end of their life. It provides a team to manage these symptoms in the patient and their environment. Entering the patients health care team at the 11th hour is stressful for the patient, their loved ones and the hospice team.
I hope you reconsider your current practice