What We Don’t Know We Don’t Know in Health Care

Author

Carson Eldercare Consulting & Management

For more information about the author, click to view their website: https://www.carsoneldercare.com/

Posted on

Jan 13, 2025

Book/Edition

Pennsylvania - Greater Pittsburgh Area

What We Don’t Know We Don’t Know in Health Care:”

The Importance of Keeping Our Loved One Comfortable Towards End of Life, and Why It’s Often Not Done.

Introduction:

Maintaining comfort and peace in individuals that are nearing the end of life is so important, yet too often I do not see this being done. I was recently privy to a situation where, per family report, their aging loved one was in a facility and restless for ‘days on end’ without any intervention. I mentioned to the family that they may want to ask for some medication to relieve their loved ones’ restlessness. One of the family members reported back that within hours of our conversation, their loved one received such a medication. The family stated after receiving this medication that he was the most peaceful he had been ‘in over a week.’ I could feel the relief in their voices. Unfortunately, I have seen this so often that it was the impetus for my next blog subject.

Factors:

I see multiple factors accounting for why individuals approaching the end of life are not made as comfortable as they should and could be. At facilities, one common reason is due to the transitional period that occurs once an individual or family decides they want to move from aggressive treatment to hospice or palliative care. Generally, once these wishes are expressed, a hospice consult is placed. It often takes time (sometimes up to a day) for the hospice team to evaluate the individual. Unfortunately, facility staff often wait until the evaluation is complete prior to initiating comfort care protocols. This does not need to be the case. Staff can initiate comfort protocols by reaching out to a practitioner to request orders. Many staff either do not appear to realize that they can initiate this order set or are too busy to do so.  The bottom line is that if the individual and/or family has consented to comfort measures and no aggressive treatment, protocols can and should be implemented right then and there. It often takes probing from an advocate or a family member to do so.

Another reason individuals do not receive comfort medication at end of life is due to the practitioner being unaware of their discomfort. With the overburdened medical system, practitioners often do not get to spend ample time with their patients. They often only have a few minutes to round and hence may be unaware of their patients’ pain, agitation, or restlessness. This is where it can be helpful to have an advocate or loved one relay to a practitioner the observation that the senior individual is in distress. Much like a mother is attuned to her infant, often family members or others intimately familiar with an individual’s behavior are the ones that pick up on subtle cues of discomfort or distress. In the situation I described above, the family of the restless individual stated the health care team appeared unaware of the individual's discomfort. One of the family members was with the loved one for hours on end, and she stated that his restlessness was very intermittent.  With that being the case, the restlessness could easily be overlooked by staff. In addition, facility staff are extremely busy and may not take the additional time to communicate restlessness to practitioners unless asked to do so by an advocate or loved one.

One final reason I see individuals at end of life not receive adequate comfort medication is due to reluctance of staff to provide adequate comfort medication. Many nurses are hesitant to administer reasonable amounts of such medicine for fear of ‘hastening’ death or ‘euthanizing’ someone. I generally do not see this with hospice or palliative care staff as they have ample education on the importance of maintaining comfort in end of life and how to do so. I instead see this with general facility staff who may not have the training or experience in palliative/hospice care. Years ago I was sitting with family in a hospital room of their loved one as he was passing. The individual was clearly restless: pulling at his tubing and attempting to get out of bed. I was concerned not only for the discomfort of the individual but also the toll his discomfort was taking on family. No one should have to witness a loved one near the end of life suffer if it’s possible for the suffering to be alleviated.   I asked the nurse if she could administer more medication to relieve the individuals’ discomfort and she replied that she didn’t have an order to do so. I kindly asked that nurse to communicate to the attending MD that the medication provided was insufficient for this individual and request a dose increase or another medication. She did so and the individual ended up receiving the appropriate amount of medication needed to pass away peacefully.

Conclusion:

The bottom line is that we all deserve to be comfortable at the end of life. It often takes an advocate or loved one willing to speak up to ensure that this gets done. Promoting comfort not only provides dignity and peace to the dying individual but also priceless peace of mind to the loved ones involved. I am a passionate, vocal advocate regarding the importance of ensuring this for families and their loved ones. Any questions please do not hesitate to contact me.

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  • Seniors Blue Book was not involved in the creation of this content.

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