Accepting an infant in to hospice, new experience, ADVICE please!

Specialties Hospice

Published

Hello!

my hospice organization has decided to accept an infant with trisomy 18. The baby is fairly stable at this point only needing 1/2 LPM via NC and has orogastric feeds every 3 hours. The baby has some cardiac defects of VSD and PAD. Also has hydronephrosis in one kidney on profylactic abx. From what I have been told this baby will most likely not make it to their first birthday and that their demise will most likely be sudden in that the parents will wake up and find baby this way. My questions are:

what can I do to help support parents?

not having barely any experience in peds what should I be looking for?

any information for trouble shooting the OG tube?

They say that baby will most likely not need comfort meds, what do you think?

what has been your experience with infants?

thank you in advance for any advice or tif bits!!!

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Specializes in NICU, PICU, Transport, L&D, Hospice.

In my view, the case nurse for this infant should be a nurse with peds experience.

Review your infant and pediatric VS and assessment guidelines. This infant may experience dyspnea. Kow how to assess for that, do you know what dyspnea looks like in a newborn or infant? The hydronephrosis may be uncomfortable, make certain that there is a plan for that.

Does your agency have policy/procedure relative to OG tubes and OG feeding?

Support the parents by listening to them.

Celebrate their infant with them, help them to nurture and love on him/her.

Encourage normal sort of things, like photos and keepsakes.

Make certain that they have the spiritual and social support that they need/want.

Follow their lead relative to the goals for care.

Good luck

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Specializes in Hospice and Palliative Nurse.

First...don't panic :) I had the wonderful opportunity to care for a baby with the same terminal illness. The referral came while the mom was still pregnant. The mother & dad choose to not terminate the pregnancy....so, I got to be present in the delievery room, assist with bringing the baby home and prounouncing him 32 hours later. It was difficult, but so inspiring! He was a beautiful baby, he did have the cat like cry and needed a touch of Roxanol towards the end due to respiratory distress and stridor. He was blue around the mouth from birth until he passed.

The family in this case had a very strong Christian core and strong family support. I think it helped them greatly. Maybe help the family with taking hand and foot impressions, journaling that sort of thing. Be there for them and be accepting, that is what they need.

"Everything in life I have learned has come from those with little life left"

Peace...

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I haven't had this experience. In fact, we've had no children at all since I started here.

The two responses so far are really wonderful. Looking forward to reading more.

I've always considered being a hospice nurse an honor because this is a difficult time in life for folks and the fact that they let me into their private space is amazing.

Even though this is hard, it is also a privilege for you to be with this family during this journey. I'm proud of you.

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Specializes in Hospice and Palliative Nurse.

Spidey's mom....we have our special talents and find our best "fit" as nurses. If you had told me I would end up in end of life care, I would have told you you were nuts!!

It took taking care of a terminal family member to open the door for me.

Nursing is an area where we can all be the best that we can be and get paid for it lol!!

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Thank you so much for the responses! Unfortunately in our organization we do not have any nurses with peds experience. I have a little from working as an Ed tech for a few months and my internship in the picu while in school. I was the only nurse willing to take this case, while I may not be the best qualified for this patient I still feel like I can do this family justice in helping them in their time of need. As of now the baby is stable and is thriving. We are taking it day by day. I rely on our nicu nurses and the baby's pcp for assistance in care. I also am very thankful for the advice of my fellow nurses on this forum. Every patient I have the honor of caring for has taught me how to be a better nurse and this patient is another step towards being the best nurse I can be.

again thanks for the input!!

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Specializes in NICU, PICU, Transport, L&D, Hospice.

Good for you and thank you for stepping into the gap for this child.

The neonatologist and NICU staff will be invaluable in determining the appropriate dosages for any comfort meds that are needed.

I suspect you will do well by this family.

Next you will be asked to write the pedi P&P for the hospice agency.

Good luck!

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Specializes in Hospice and Palliative Nurse.

Amburgerz12....Try to focus on living rather than "dying". Prepare the family gently for symptoms they may see down the road. Treat the symptoms as they surface and ENJOY the baby as long as he/she is here. Remember to live while we are dying :)

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Specializes in Hospice and Palliative Nurse.

I forgot to add...try to take the ENLEC training courses through the Hospice and Palliative Care Organization. They have adult and Peds couses. Well worth the money and time investment. It is a Train the Trainer module.

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I forgot to add...try to take the ENLEC training courses through the Hospice and Palliative Care Organization. They have adult and Peds couses. Well worth the money and time investment. It is a Train the Trainer module.

Thanks. Just looked at the website.

Wish it were available online. I can't afford to travel right now.

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My hospice takes many peds and infant cases, although we have very few peds – experienced nurses on staff and most of them are in another region. I subsequently found out that many hospices refuse peds cases entirely because they do not feel qualified to handle them. This is unfortunate. I have no special peds training, but have had several infants and children in my caseload and have never felt that I did not provide appropriate and effective care. There are many resources in your community, including the pediatrician and local Children's Hospital, who will be happy to help. I remember driving to the hospital to pick up a small size catheter. Try your best to research the expectations of patients with that disorder. Once I found a lot of resources from the peds professor of the local nursing school. You will be surprised – – when you're with the patient and family, you will just know what to do.

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I have 2Trisomy 18 cases. One is 16 years old, and a 17 month old. Both made it passed the one year mark. Respiratory will be your main concern. Both of my cases have trachs and g tubes for feeding. Cognitive function is null. I have one set of parents that know that their child can pass away at anytime. The other set is in deep deep deep denial. I want to strongly encourage that the family talks to a family therapist. Be supportive and dont give false hope. Yes, i heard a nurse tell the family in denial that the doctors (multiple) dont know whst they are talking about.

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