Imposing compassion?

[TLDey]

A hospice agency I recently worked for struggled with the idea of holding families accountable for compassionate care. Because I thought we should hold families accountable, I was looked at as narrow-minded. For example, I cared for a dementia patient who was a holocaust survivor, who me, suffered night terrors. Seroquel actually helped, but his family stopped giving it to him, because he was too sedated, and they were not willing to try any other meds as they feared side effects. The social worker on the case identified that this family's preference was lucidity vs comfort. The IDG ssaid we can't impose our values on the families. So his night terrors continued for the couple of months he was in our care, until he developed what appeared to be an acute incarcerated hernia, after which he died 3 days later. With the hernia, he was moaning, and saying "it hurts". The family fought me on medicating him, even after I told them his prognosis if he did indeed have an incarcerated hernia. I finally told the family it wouldn't be right to keep him at home with an incarcerated hernia without medicating him, and they let me give him a dose of Morphine. A nurse went out the next 2 days, to reinforce pain management. My manager called me into her office, wanting to know why I thought I had the right to "impose my own values" on this family. (The family complained to the social worker, and the social worker complained to my nurse manager, again saying this family valued lucidity). The MD thought the patient should be medicated every 4 hours, but says we are powerless to hold families accountable for managing symptoms. It was a difficult work environment, because the same sort of situations came up repeatedly with my 1-1/2 years with this company. There was no team approach to overcoming barriers to symptom management, because the team did not accept as it's responsibility, overcoming barriers to symptom management. I'm afraid to go back into hospice nursing, without knowing what I can do in this kind of a situation? Has anyone had similar experiences, and if so, what can be done about it?

[tewdles, RN]

I will always advocate for bringing families with unrealistic or even inhuman ideals of "comfort care" into the IDT meeting. Certainly, we may not change their minds, but that is the ultimate support for the hospice professionals visiting in the home.

Sometimes, patients and families have requests or expectations that a particular agency may not be able to meet. It is not unreasonable to recommend a transfer of care to an agency that may more closely share the philosophy of the pt/family. In my mind that is a heck of a lot better than having an unpleasant death, a disgruntled family, and a traumatized staff to deal with for months after the books are closed.

[TLDey]

"I will always advocate for bringing families with unrealistic or even inhuman ideals of "comfort care" into the IDT meeting."

Hi Tewdles,

Do you mean, actually inviting them to come sit in at the meeting to discuss their case with the IDT members? Have you had families actually do that, and was there then some kind of understanding/resolution? Was it originally presented to the family, that the staff were having concerns re: the family not following a recommended plan of care, or re: symptoms not being managed? (Our IDG was not quick to voice a statement of concern to the family- they might have commiserated at the IDG table, but for some reason did not feel it appropriate to put their name to it in confronting the family). It did not really feel the IDG supported the CM's in this sort of conflict (the CM's were out there battling it on their own); the IDG might have sent the MD or another nurse out to visit/talk with the family, or in occasional cases the SW may have arranged for an RN/SW "family meeting", but it NEVER seemed to resolve the conflict/make a difference, and the most common thing I heard in our IDG or from our MD's, was that "there's really nothing we can do" in the situation. I was feeling like people thought I was a thorn in their sides for having my concerns...

"Traumatized", TL

[Steeleworks]

I have seen the DPOA overridden by doctors so many times in the hospital it would make your head spin. It would seem the first concern would be the patient and what was in the patients best interest. In other words, what would they want if they could speak for themselves?

Would a family sue because the patient was not suffering in pain? My attorney friends have said this would never make it very far as a suit.

There is a second issue here too. As I move toward a holistic nursing career, I am finding numerous ways to alleviate pain using all natural means. We had started using holistic treatments in the hospitals where I have worked. Why not hospice? One hospital even offered acupuncture.

Depending on how natural a family would want to go, NAC or Bonded Whey Protein Isolate are two simple, natural ways to alleviate pain and the challenges of many symptoms. If the pain is inflammation induced, getting a doctors order and simply using sodium bicarbonate could help reduce the inflammation and the resulting pain.

It would seem that there are two ways to work to resolve the problem if the agency was open minded.

[TLDey]

Dear Steeleworks, have you used these interventions in a hospice setting, and can you get effective relief without narcotics? Is there such a thing as a holistic/naturopathic hospice practitioner? I'm so humbled... TL

[Steeleworks]

Have I used these...?

I had a patient with a UTI and, although still drinking, is deteroriation was so fast that he would soon stop drinking. My thinking was that he would not have been able to complete the antibiotic course. So I asked for and got an order for Alkaseltzer. We gave it to him at 3pm. I went back at 7 am for the next visit and the UTI was cleared up. I had the CNA check him again later in the day and it was still clear.

As to the others, I have not personally used them in hospice but have used them as a holistic nurse. One patient with chronic diarrhea for years but loosing bone mass from years of steroids, found she could have milk so long as it was organic.

A patient with a torn rotator cuff who was refusing to get the surgery found the pain could be managed by eating one red beet a week. The catch, it had to be raw. Think carrots but they bleed on your fingers. Only one because they can cause kidney stones.

A few have found relief from knee pain, neuropathic pain and some somatic pains with NAC along with vitamin C, and any kind of oil, fish, codliver, vitamin E, etc.

In the hospitals where I have worked we have used black strap molasses and peanut butter to boost blood counts. It does not work where there is arthritis. This works with and without EPO (Epogen). I have suggested it to my patients who were anemic.

Also, in the hospitals, I proposed and several doctors started prescribing gum chewing to decrease post op illius risk.

[tewdles, RN]

"I will always advocate for bringing families with unrealistic or even inhuman ideals of "comfort care" into the IDT meeting."

Hi Tewdles,

Do you mean, actually inviting them to come sit in at the meeting to discuss their case with the IDT members? Have you had families actually do that, and was there then some kind of understanding/resolution? Was it originally presented to the family, that the staff were having concerns re: the family not following a recommended plan of care, or re: symptoms not being managed? (Our IDG was not quick to voice a statement of concern to the family- they might have commiserated at the IDG table, but for some reason did not feel it appropriate to put their name to it in confronting the family). It did not really feel the IDG supported the CM's in this sort of conflict (the CM's were out there battling it on their own); the IDG might have sent the MD or another nurse out to visit/talk with the family, or in occasional cases the SW may have arranged for an RN/SW "family meeting", but it NEVER seemed to resolve the conflict/make a difference, and the most common thing I heard in our IDG or from our MD's, was that "there's really nothing we can do" in the situation. I was feeling like people thought I was a thorn in their sides for having my concerns...

"Traumatized", TL

Yes, on a number of instances I have had family members join our IDT meeting. We generally have the team make this as a recommendation or option to the family, schedule them to meet with the entire team for 15-30 min at the beginning of a meeting. The case manager presents and introduces the family. Because the team is already familiar with the case it is generally not reviewed unless there are family members present who request clarification or timing of events, etc. The POC issues which precipitated the meeting are reviewed and the entire team develops the plan. The family are integral to this and their agreement with a precise POC is documented in the record and they are given a copy.

I have found this to be highly effective. Even if the agreed upon plan does not meet the expected goals, the family often feels so empowered and supported that they view the process as successful.

On the other side it is time intensive. We never invite more than one family to a meeting. We typically review 60-75 pts per week in our primary IDT which lasts about 2 hours (2.5-2.75 with family mtg).

Hope this helps. Good luck!