We've had a relative and a friend who each had Hospice care, one in another state and one locally. Both their spouses thought that Hospice was wonderful and wondered why they had to wait so long before their loved one was eligible for it. So when the Annals of Internal Medicine for February arrived, I decided to read an article titled "End-of-Life Care Discussions Among Patients with Advanced Cancer" and the section called "In the Clinic" which this month was on Palliative Care.
I knew that Hospice is for patents in their last six months of life. More than three quarters of them have at least one of four diagnoses: congestive heart failure, kidney failure, dementia or chronic obstructive pulmonary disease (emphysema). They have no life-saving avenues left and are normally not in a hospital setting. Some prefer to die at home and some are in long-term care facilities. We have a local organization, Pathways Hospice which supplies care for patents in several Northern Colorado communities; they offer on-call nursing care 24/7, spiritual care, appropriate medical equipment and counseling services. Their care is overseen by physicians trained in Palliative Medicine.
I thought the two overlapped, but didn't know as much as I wanted to much about Palliative Care itself. It's now a subspecialty recognized by the American Board of Medical Specialties and its physicians usually work with a team that may include social workers, chaplains, physical therapists and pharmacists. The patents they care for have severe illness and are usually in a hospital setting, although some may be seen in outpatient clinics.
There are no treatment limitations for this group of patients, but for some the article said, "You would not be surprised if the patent died within 12 months." Other have had recurrent hospital admissions or complex care needs. They may have limited family support or chronic mental illness.
Management of their symptoms: pain, shortness of breath, nausea, agitation and distress, delirium and "failure to thrive" are crucial avenues for the Palliative Care team to address. Those teams have quadrupled in the last ten years.
The link I supplied led me to a directory of hospitals which offer Palliative Care teams. Physicians trained in Palliative Medicine supervise both those teams and Hospice activities.
The problem I noted reading the Annals articles was that many patents don't ask their docs about EOL care and, somewhat surprisingly, many physicians don't have any discussion with their patients about this crucial area until the very last moment, if that. Frequently people in the final month of their lives finally have that EOL talk; often they're an inpatient by then and being cared for by someone other than their long-term physician.
My wife and I have discussed what we do and don't want, but I think it's time for me to let my primary care physician know what I've decided. At present I'm basically healthy, but I'm also about to turn seventy-one and you never know.
Tags: advance directives, durable health care power of attorney, end-of-lfe care, health care proxy, hospice, palliative care