Care Options

As the dementia patient's brain dies, their body is less able to respond to infections or other illnesses which may arise.  An upper respiratory infection is more likely able to move into pneumonia than it would have previously because the brain is unable to direct the body to efficiently fight the infections.  The care provider(s) and individuals who have a voice in the patient's care must make decisions about how to have the patient treated.

They will be asked to consider pain medication, hospitalization, feeding tubes, and eventually hospice care in addition to many other medical decisions.  In short, they will be asked to provide palliative care or to intervene more directly and aggressively in the immediate health concern the patient is facing such as a bout of pneumonia.

Some definitions may help us at this point.

Palliative care is defined as medical care focused on relieving and preventing patient suffering in all aspects of the patient's life using a multidisciplinary approach.  Palliative care does not seek to cure the patient; just ease their distress and improve the quality of life.  Unlike hospice care, palliative care may be given at any point of a serious illness regardless of the diagnosis.

Hospice care is palliative care provided for a terminally ill patient, usually in the last stages of the patient's life.

Intervention care, if I can be allowed to use those two words together, is the medical care administered to  tend to the immediate issue.  For example, the patient has pneumonia and treatment is administered to stop that particular infection.

The patient's care providers will be asked to decide to aggressively tackle that infection or to allow the disease at hand to progress while providing palliative care.  For many, this decision is a difficult one and it may go against what the patient themselves would choose were they still able to make the decisions independently.  However, if dementia is a terminal disease, we may be wise to ask what purpose is served by aggressively treating the infection at hand.  I'm not saying to let the patient suffer.  I'm merely questioning if the hospitalization is necessary or the best course of care which can be provided to the patient.

Questions to consider:

  1. What level of care would my loved one, the patient, want in this circumstance?  If possible, you should address this question with your loved one before their dementia progresses to the point where they are unable to communicate their preferences.  
  2. Given my loved one's preferences, would aggressive medical intervention or would palliative care be best?  Should there be a medical directive put into place?  One thing to keep in mind; if the medical directive says "do not resuscitate" or anything similar, then the care provider should not call emergency services as they are mandated to ignore that and provide intervention care to the emergency at hand.
  3. Does intervention care make sense given the current state of my loved one's decline?
  4. Am I seeking intervention care because of my own needs and desires instead of my loved ones?  We need to be honest with ourselves as we evaluate the medical decisions placed in front of us.  Are we seeking intervention because that's what our loved one wants or because we are not yet ready to say good bye if death is a possible outcome of the illness at hand?  We're human and making a choice which could lead to someone's death is not something that most of us would willingly do.  If we consider how hard it is to euthanize a loved pet, then it is understandable why we struggle with the care questions for our loved ones.  
If your loved one is still able to participate in the conversation and still able to state how they want to be treated, these questions become moot, of course.  If your loved one is currently in a nursing home, be sure to convey all of your care decision information to the care facility as it may help them to avoid unnecessary hospitalizations.

Is it too early in Lyn's dementia for me to be raising this topic?  I hope not.  Lyn is most likely in a middle stage for her dementia.  She's been forgetting recent events she's experienced.  She's lost complex skills and she's become increasingly moody and withdrawn.  Lyn can still participate in her care and can still state her preferences.  However, there will come a time when she is no longer able to do so.  Mom and I would be well served to be on the same page with regards to her care.  Planning now will facilitate Lyn's care and quality of life in the months to come.

Additional Information Sources:
Barriers to Excellent End-of-Life Care for Patients with Dementia
Dementia Patients Suffer Dubious Hospitalizations
Should Advanced Dementia be Considered a Terminal Illness
Redefining Dementia as a Terminal Illness


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