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Advances In Advanced Directives

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As individuals live longer with chronic illnesses, problems with traditional Advanced Directives for health care are beginning to become apparent. One issue which can create heartbreaking scenarios for spouses and children is whether to feed a patient who is in the late stages of dementia.

If you have not witnessed this problem, your first reaction may be to say: “Of course you should feed a person.” But, the cases which spotlight the problem might give you pause. For example, a retired nurse had specifically stated she did not want to receive nourishment or liquids if she was suffering from extreme mental disability. She suffered from Alzheimer’s disease for 17 years and despite her stated wishes, nursing home staff continued to spoon feed her for years because she opened her mouth when they offered food.

In a similar case, a woman had an Advanced Directive (AD) stating she did not want to be spoon fed, but the AD was not specific enough.  Her care givers encouraged and cajoled her to eat and often spent two-hours feeding her for every meal.

To learn more about one loving family’s struggles with this issue visit: https://www.npr.org/sections/health-shots/2017/11/03/561393940/should-dementia-patients-be-able-to-decline-spoon-feeding

The cases are very sad because the patients often waste away as family members try – often spending time in court — to follow their wishes and maintain their dignity.

Those who are advocating for better ADs believe many patients who do eat when food is offered to them are only reacting by reflex when a spoon is pressed against their lips. The fact that they open their mouths, does not necessarily prove that they want to eat.

The U.S. Department of Health & Human Services Public Access page on this topic calls for a new type of feeding order in this statement:

“The majority of nursing home residents do not have orders documenting their wishes about the use of artificial hydration and nutrition. One reason is that orders to forgo artificial hydration and nutrition get wrongly interpreted as “do not feed,” resulting in a reluctance of families to agree to them. Furthermore, nursing homes fear regulatory scrutiny of weight loss and wrongly believe that the use of feeding tubes signifies that everything possible is being done. These challenges might be overcome with the creation of clear language that stresses the patient’s goals of care. A new order, “comfort feeding only,” that states what steps are to be taken to ensure the patient’s comfort through an individualized feeding care plan, is proposed. Comfort feeding only through careful hand feeding, if possible, offers a clear goal-oriented alternative to tube feeding and eliminates the apparent care/no care dichotomy imposed by current orders to forgo artificial hydration and nutrition.”

In response to the need for clearer directions, End of Life Coalitions in several west-coast states and New York State have developed recommendations about how to add more specific instructions for oral feeding and drinking to Advanced Directives. These instructions, in general, call for continuing to feed the patient only if the patient enjoys eating and willingly participates in the activity of eating.

Advocates recommend a statement be combined with other ADs This statement may be called Physician Orders for Life Sustaining Treatment (POLST), or Medical Orders for Life Sustaining Treatment (MOLST) or, in Delaware, Delaware Medical Orders for Scope of Treatment (DMOST). When families include the family physician in the conversation, the statement can become part of the patient’s medical record. Advocates encourage seniors to specifically address the idea of hand-feeding in such a document.

They also recommend that the person who has completed these documents share them widely with family members and caregivers and express their wishes in person. The documents should be shared with administrators of care facilities before a patient is admitted to make sure his/her wishes will be followed by care givers.

Here are some specifics about POLST documents.

The purpose is to:

  • Document your wishes about limiting assisted oral feeding when dementia becomes advanced.
  • Ensure that your appointed health-care agent is empowered to implement your choices when you can no longer speak for yourself due to advanced dementia.
  • Create an actual medical order unlike ADs.

The POLST will include medical triggers which the health-care agent and primary care provider would agree upon for patients who are in advanced-stage dementia. Those triggers include:

  • The patient is unable to speak comprehensively, move about independently, recognize family or be continent.
  • The patient is unable to make health-care decisions.
  • The patient is unable to feed him/herself.

Here are two options to consider if you and your physician are contemplating a POLST:

Option A

The patient forgoes all life-prolonging measures including CPR and all nutrition and hydration whether provided medically or by assisted oral feeding; specifically refuses oral feeding even if the patient opens his/her mouth when a spoon is brought to his/her face; requests comfort care and symptom management with palliative/hospice care.

Option B

The patient forgoes all life-prolonging measures including CPR and medically provided nutrition and hydration and limits oral feeding to comfort-focused (ice cream and cookies all day if the patient wants it); feedings are provided only while the patient demonstrates enjoyment and positive anticipation regarding eating; only give foods and fluids patient seems to like; feedings are stopped once the patient no longer appears interested or begins to cough and choke; patient is not to be coerced or cajoled into eating; once feeding is stopped the patient will receive comfort measures and medications with palliative/hospice oversight.

We understand this is a difficult topic, but it’s an important topic and can be covered in your estate plan. Implementation of POLST is evolving but for many people the ability to make sure their wishes are followed is very satisfying.