Letters to the Editor is a periodic KHN feature. We welcome all comments and will publish a selection. We will edit for space, and we require full names.
Stories that drew a lot of reader comment included one about a federal investigation into San Diego Hospice as well as another detailing the mental health provisions included in President Barack Obama’s gun plan.
Here’s a sampling of the reaction to the story Slowly Dying Patients, An Audit And A Hospice’s Undoing (Dotinga, 1/16):
Joanne Lynn, MD, Altarum Institute Center for Elder Care and Advanced Illness, Washington, D.C.
The report does make the point that prognosis for many people has become ambiguous; yet, the prose goes on to say: “Pacurar, of San Diego Hospice, said another group of patients needs more attention: those who are dying but aren’t within that six-month window that makes them eligible for hospice care — in other words, the patients that her hospice used to be willing to treat.” The problem actually runs one step deeper. If we went to see 100 patients today with serious multiple chronic conditions in older age [which] we somehow magically knew would have 51 of them dead within six months, we would be unable to pick out the ones who will survive longer. Indeed, probably 20 of them would live for two years — and throughout that time, they would not be “better” – just not yet dead. Our images of what is to be “dying” don’t work in this population. Indeed, even my example here is not clearly what is meant by a “prognosis of six months.” That critical “statistic” is not defined in regulation. So — as your doctor — am I supposed to notice when you become 51 percent likely to die within six months, or 90 percent, or 95 percent, or what? What is the appropriate error rate? It did not matter much when the typical hospice patient had lung cancer — those lucky enough to outlive six months still died within a few more months. However, for frailty of old age, those who “walk the tightrope” and stay alive can keep doing so for a very long time. … The question for hospice is [what is] the acceptable error rate in prognosticating death, when the timing of death is persistently ambiguous (perhaps until the last few days or hours).
Alison Price Leach MSN RN CCM, Scripps Memorial Hospital, La Jolla, Calif.
As a nurse case manager for more than 15 years, this unfortunately is an age-old problem. In my opinion, the most difficult thing was to find treatment/care for individuals who did not qualify to be in a skilled facility yet, but needed more care than their family could provide. Perhaps with the Affordable Care Act, this will become a realization and be dealt with.
Pamela Saunders-Williams LISW-CP, Charleston, S.C.
I believe that differentiating between “palliative care” and “hospice care” may be a key factor. Most very ill patients need palliative care counseling and assistance — for instance, a social work assessment of the patient and [the] family’s medical and psychosocial needs, and resources with recommendations regarding addressing the critical problems and solutions that will enable the patient to receive necessary care while not exhausting all social and financial resources. Often, the patient needs transportation services for medical appointments, assistance with grocery shopping and filling prescriptions, and maybe some minimal assistance with bathing and simple meal preparation. … During this phase, the patient and family are most receptive to pre-planning arrangements and gathering the will as well as financial and tax documentation. These interventions will also begin emotionally preparing the patient and family for the future. … Hospice services are then more appropriately used when the critically ill patient does, in fact, have only months [to live], as the medical team is able to determine. … The patient’s comfort and family’s acceptance are top priorities.
Readers also commented on Children, Teens, Young Adults Focus Of Mental Health Provisions In Obama’s Gun Plan (Varney, 1/17):
Barbara Trentadue RN; Racine, Wis.
The main issue is being danced around … is having the ability to get help for loved ones. Do you know you cannot even make an appointment with a psychiatrist for a loved one? The mentally distraught individual has to make it. Unless they are threatening harm to themselves or someone else, you cannot get help for this individual. You can recognize a mental health problem, but try and get them admitted to a hospital without their consent. It is impossible. The laws have to be changed here, not in gun control. If the mentally impaired individual wants to hurt someone, they will find a way to do this. Mental health is impossible to obtain with the laws as they presently are.
Helen M. Broughton, Detroit, Mich.
Although access to automatic weapons is a gap that needs to be closed, I do agree that individuals are aking a choice to use guns in a violent way. The disturbing part of the story is that the issue goes deeper still — to the environmental factors that exacerbate mental illness in youth and these were not mentioned. … Assistance to get our population up to a basic level of mental/emotional competency would need to be more far-reaching. The other glaring hole in the story is the environment of violence that is fed to children through entertainment and media vehicles. … Kudos to the children, parents and teachers who can block out this violence. … Those [who are] more vulnerable and less fortunate, with lower thresholds of coping or greater sensitivity to damaging influences, should be protected. That can be done if government uses its power to target and control external factors while elevating awareness of the root causes of mental illness.