The Importance of Compassionate and Involved Post-Mortem Care for the Patient Experiencing Pregnancy or Infant Loss

Posted by Such Is Life - A Dicey September 12, 2018

The Importance of Compassionate and Involved Post-Mortem Care for the Patient Experiencing Pregnancy or Infant Loss

By: Amberly Dicey, BSN, RN; Founder/Director; Kentucky Cuddle Cot Campaign, Stillbirthday Birth & Bereavement Doula

As healthcare providers, we are afforded the opportunity to make a difference in patient’s lives on a daily basis. Whether that be by giving them extraordinarily lifesaving care as a nurse, catching an early potentially dangerous diagnosis as a physician, getting someone back on their feet as a physical therapist, providing care to a patient who can’t do activities of daily living on their own as a nurse aide, or even something like brightening someone’s day with a smile or positive attitude when they come in for an x-ray as a radiologic technician. All of us have a great open door to make a difference in others’ lives every single day.

Some of us, who work specialties such as labor and delivery, emergency department, operating room, neonatal intensive care unit, intensive/critical care unit, cardiovascular intensive care unit, emergency medical services, helicopter emergency medical services, hospice, or long term care…, may be subjected to death more than others. Some of these specialties are even centered around death itself. This is where post-mortem care and bereavement services can make a substantial difference in how a patient’s family recovers and subsequently deals with the loss of a loved one. This is our chance as healthcare professionals to give the gift of dignity and respect for the very last time to a person and help these families with this life altering crisis.

For the purpose of this article, the focus will be on pregnancy and infant loss. This type of loss is very unique in that the loss begins before the child has ever had a real chance to live, and while you are not dealing with the patient as a loss, you’re dealing more with the family themselves. This type of loss will be the greatest loss a person ever experiences in their life, so we, as their healthcare provider, have very special roles, as well as a huge chance to help this person outside of just providing an excellent level of care. This will likely be the hardest loss you will ever have to assist with in your career as well.

Parental bereavement is an exception to the general conceptualizations of mourning. Grief in healthcare and in psychology is often referred to in “stages”. Parental bereavement can be separated in 6 Rs as explained by Dr John Van Aerde, Department of Pediatrics, Stollery Children’s Health Centre, University of Alberta, Edmonton, Alberta in “Guidelines for health care professionals supporting families experiencing a perinatal loss” on the US National Library of Medicine National Institutes of Health website at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2807762/ on September 6, 2011.

Recognizing

Parents may have difficulty recognizing the loss because it violates their basic function as parents and defies the laws of nature. Often, social negation of the loss exists.

Reacting

Bereaved parents may have difficulty reacting to the loss because more secondary losses, like loss of self, take place in this environment.

Recollecting

It may be difficult for the bereaved parent to recollect or re-experience memories of their baby because there is little to no tangible proof of their brief existence.

Relinquishing

The bereaved parent may have difficulties relinquishing old attachments to their baby due to the fact those are usually attached to a certain part of them and again violates nature’s primal instinct of parenthood.

Readjust

It is often difficult for the bereaved parent to readjust to the new world without feeling like they’re forgetting the old one. Parental relationships demand role behaviors that are not as amenable as other relationships to a healthy transition between living and dying.

Reinvesting

Bereaved parents find it extremely difficult to reinvest in another relationship with a potential child after losing one. Reinvesting in a new relationship is much more feasible when it is with a peer, spouse, or parent than when the relationship is with a child. This in itself can create a sense of aloneness and make the parent not want to try again.

What can we do as healthcare professionals to make this transition easier for the bereaved parent?

-Allow around the clock visiting hours for family as requested by parents.

-Provide tools for memory making.

-Optimize bonding and encourage immediate interaction.

-Do not rush anything. The parents should be allowed all the time they want and need with the baby! They should be allowed to move about their room and even go outside in a secluded area if you can provide that.

-Assure them of their rights with their child. The right to keep the baby for any duration of time, the right to have photos made of the baby, in the state of Kentucky the right to take the baby home with them if they desire, and other state specific rules that supersede any facility rules in this situation.

-Remember that the child is the parents’ and not anyone else’s and they hold all the rights. We cannot (and should not) tell a parent not to change their baby’s clothing, not to take something off or put something on. They hold the rights except in some cases where an autopsy will be performed, where extubation or removal of lines may not be allowed.

-Assure the parents that it is okay to be sad, uncomfortable, scared. Reassure them that this is normal.

-Make repeated offers for them to hold the baby; this facilitates bonding and in the long run, better coping.

-Warn about the possible effects of death on a fetus or neonate such as discoloration, skin desquamation, bruises, cuts, rigor mortis, etc. And assure them that all of this is very normal.

-Reassure the parents that their baby was not alone or in pain at the time of death.

-Provide mementos (foot and hand molds, clothing to fit the baby if the family doesn’t have any, memory plates, stuffed animals in twos so that one can be kept with baby and one with the family, lock of hair, foot and hand prints, birth certificate/stillbirth certificate).

-Treat them just like the families and parents of all the living babies.

-Make sure the patient is furthest away from any potential living babies who they may hear crying.

-Identify the patient’s door with a symbol of some sort that the staff and all hospital employees are familiarized with so that they know this patient is a bereaved mother. IF your hospital does not have anything in place, please contact me for ideas so that you can put this in place NOW! This is very important. It can be extremely traumatizing for a parent if staff comes in asking about or congratulating you on your new baby when your new baby is dead.

-Provide spiritual support if requested.

-Provide local resources for memorials, funeral homes, assistance with bereavement services, grief and support groups, online resources, etc.

-Encourage a name for the baby if they do not already have one.

-Encourage the parents to take part in the care of the baby. Changing, bathing, combing hair, etc.

This brings us to probably the two most important parts of perinatal bereavement…

-Provide a way to preserve the baby for a maximum amount of time if requested, the duration of their stay. The only humane and non-obtrusive way to preserve a body is with dry, cool air such as a morgue. However, when dealing with the loss of a baby, who is taken much too soon, we want to promote the baby being close to the parents. The only way we can do this is with a Cuddle Cot. Many other options and procedures have been substituted, but none are proper. Placing the baby over ice or cool packs is not appropriate because that ice will melt and create condensation which will then get on the baby and create wetness and further skin breakdown. Not to mention, when the parent goes to hold the baby, not only are they dealing with cool, stiff limbs, but they are now dealing with further breakdown AND wetness. This is not okay. This is not humane and it is not considered proper practice. This may have been okay before we were presented with a wonderful device that can facilitate bonding, proper coping, and slow or halt the effects that death has on the body. But now we have other options, and a relatively inexpensive one for all intents and purposes.

TIME & THE CUDDLE COT™

The Cuddle Cot™ is a cooling device manufactured by Flexmort that is comprised of a cooling unit, tubing, a reflective mat, and a cooling pad. The device takes about 5 minutes to set up. The mat can be placed under the reflective mat (which helps to optimize cooling) which can then be placed underneath a receiving blanket in either a Moses basket or a bassinet. The tubing is then plugged in to the unit. It can plug into a regular electrical outlet. It turns on with the press of a couple buttons and is completely cooled to optimum temperatures and ready to be used within 5 minutes depending on ambient room temperatures. It is whisper quiet. It runs on distilled water and comes with a bottle of solution that makes sure the water stays fresh and won’t mold inside the unit. The unit takes about 5 minutes to break down and can be cleaned with hospital germicidal equipment. It comes with its own case which can be stored away when not in use. This is the fantastic device that the Kentucky Cuddle Cot Campaign has worked diligently on placing throughout Kentucky.
Most hospitals create a policy and procedure for this device to cover all liabilities. If your facility needs assistance with creating a policy, please let me know and I can assist you with this.
Not only does the cuddle cot increase time with the baby and slows/halts the effects of death on the baby, but this in turn creates and provides more opportunities for the family and the staff to perform all the above mentioned tasks for the family without feeling rushed.

This brings us to the next most important aspect of perinatal bereavement.

PHOTOGRAPHY

Now I Lay Me Down To Sleep (NILMDTS for short) is an international not for profit organization that provides free, professional bereavement photography. All facilities should be utilizing this service if they do not have a PROFESSIONAL photography service on hand specifically for bereavement photography. All photographers affiliated with NILMDTS are professional photographers with experience in this field who are proficient at using natural, hospital, and auxiliary lighting to create beautiful, crisp images for the family at no cost. Some hospitals have a no-vendor/no soliciting/no compete policy, however NILMDTS is considered a ‘visitor’ and when requested by the family or nursing staff, is to be considered as such. They are not responsible for going through any volunteer training, any medical training, or any other facility specific training because they are considered a visitor for all intents and purposes. NILMDTS prevents their volunteers from signing any contracts or reliability releases for this reason. The parent is required to sign a consent form and a release form at the time of the session which is to be kept by the NILMDTS photographer. A copy goes in their permanent medical record and a copy goes to the parents for their records. Anyone can request a NILMDTS photographer by going to the website (www.nowilaymedowntosleep.org) and clicking on “Find A Photographer” at the very top right of the page. For hospital staff who have questions and it is after the hours of allowed contact for a photographer, there is also a link at the top of the page that says “MEDICAL” and in that drop down menu are several options that should answer any questions you as a healthcare provider may have and what to expect when requesting a session, during a session, and afterward. NILMDTS has some fliers and brochures that are available for handout at your facility to help you approach the subject if a parent hasn’t asked or arranged their own photographs. Please let me know if you need some of these and I will have some made for you. Most parents do not know that this is available and are incredibly unsure of their rights with their baby and when in a very high stress situation such as child loss, will not think to ask or will not be able to comprehend asking about it, or even may be scared to ask.

PLEASE help our patients and suggest photography to them, multiple times if needed. This is something we need to push because of the limited time allotted to do this. Ideally, your facility would already have a Cuddle Cot™, which would provide an extended window of time. However, NILMDTS photographers have a window that they can be called in, and many of them have regular jobs. So we need to be diligent in asking and arranging this for the patient so that we can get this done in ample time, allowing the family more time for bonding. The other important reason for this is that the parent is in a very, very sensitive state and may not be able to recognize the importance of memory items, or may not understand that this is no longer a taboo subject for us. We need to reassure them that it is not weird or strange or morbid. We can also assure them that if they do not wish to be included in the photographs that the photographer will still gladly come and take the photographs and if the parents do not wish to see them, they can be held for them if they ever wish to see them at any point. If staff for some reason cannot explain this or doesn’t know how, please contact a NILMDTS photographer for talking points, or for the NILMDTS to speak to the family on their own if they have questions or concerns prior to a session.

With all of this being said, you can see how much there is to perinatal bereavement and child loss, and how important our role as healthcare providers truly is to the coping and proper acceptance of this horrible loss. We cannot stop it from happening, but we can optimize the experience. The people who provide excellent and compassionate care will be remembered fondly by the loss parent for the length of their existence. They will also tell their friends, family, and many others what excellent care they received at your facility. On the other hand, families who are not treated well, who’s loss is not made a priority and are not at least offered the care and programs provided by other facilities will also remember that, forever. They will pass on to their friends and families how terrible they felt, and how they wish they had been seen at a more caring facility. Even from a public relations standpoint, it is much better to provide top notch care in this situation, as the livelihood of your facility is based on the customer aka the patient. Word of mouth goes a long way, especially when dealing with such a sensitive subject as baby loss.

I invite you to be one of these facilities…one that provides not only top notch care, but top notch perinatal bereavement care. One does not ever expect this tragedy to strike, but it does, sometimes more than once. So when they are looking for a place to trust with having their precious child, the facility that takes all sides of the spectrum of care from birth to death, will be the one they really want to choose. Be that facility. Be a facility who properly utilizes a Cuddle Cot™, who utilizes the services of NILMDTS when it is warranted and helps the family arrange memory making for their child. Be a facility that has resources and items readily available and utilizes them properly for a bereaved family. Be a Kentucky Cuddle Cot Campaign affiliated facility.