Enhancing Care After a Baby Loss

Learn the Five Principles of Perinatal Loss Patient-Centered Care and how to utilize them when meeting, giving news, helping during labor and birth, during the hospital experience and afterwards.  This practical and confidence-building session aims to help you build your tool box and be more prepared helping newly bereaved families.

Enhancing Care After Baby Loss

Sherokee Ilse

March 12, 2016

Attitude is the key.  It drives actions and words.  It helps you have INTENTION….

Five Principles of Perinatal Loss Patient-Centered Care™

They strengthen the structure of patient-centered care, driving caregivers’ intentions and actions

  1. Slowing things down and imparting information thoughtfully recognizes that clear thinking and decision-making are disrupted by the shock families experience after tragic news is given.
  1. Acknowledgment of patients’ feelings and needs within a coordinated and  comprehensive environment honors their process and provides guidance
  1. Respect for patients as parents and honoring their loved baby improves care and legitimizes their story
  1. Empowerment, guiding, and helping are more positive and respectful and productive than attempting to protect and rescue patients
  1. Sincere efforts to fully inform patients prior to decision-making and navigating the journey promote thoughtful, personal choices which minimize regrets.

 

  1. Slowing things down and imparting information thoughtfully recognizes that clear thinking and decision-making are disrupted by the shock families experience after tragic news is given. Slow things down whenever possible, increase information retention by using various communication strategies, and offer assurance they can survive.

Given the impact that shock has in a sudden crisis, we must be mindful of the parents’ ability to retain and process information as well as the impact on their decision-making ability. They will likely have a hard time seeing, hearing, and understanding. Patients who have guidance and support when the process is slowed a bit, can gain some control back, have some time to process, begin some preparation. They tend to make more thoughtful decisions with both short and longer term in mind. Make sure the parents are allowed to help set the pace of when and how information is given to them. Communicating around this time needs to be intentional and varied to catch the different styles of information retention.

  1. Acknowledgment of patients’ feelings and needs within a coordinated and comprehensive environment honors their process and provides guidance

Listen to their words and emotions during and after miscarriage, stillbirth, and other infant deaths. Provide a continuity of care from news-giving until well after they are home. Patients who are listened to and affirmed in their responses will not feel so alone or crazy. Whether you think you would share similar feelings or not, legitimize theirs. Help them be supported and treated with compassion by wise care providers throughout the first days and months of their journey. There are individuals and organizations who provide support throughout this journey complimenting hospital care and networking them back into the community support resources. Ensure communication and a plan for excellent care as soon as possible and throughout. Work with the clinic, doctor’s offices, local support including trained advisors and advocates, the hospital, support groups, counselors…to provide a continuity of care. This is one process for the families and should be viewed that way by the providers in the health care system.

  1. Respect for patients as parents and honoring their loved baby improves care and legitimizes their story

Create an environment of acceptance, support and opportunities to parent their baby as individuals and as a family. Honor their baby as you would any other newborn. This is a loved baby who was alive, but now is dying or has died. Focus on the ‘love’ and ‘baby’ part; put the ‘died’ part aside. When pregnant with child, these are parents who make choices about moms and the baby’s health. Although the baby dies, they are still parents who may need to be taught that the time they have with their baby’s physical body is precious; a time to be with baby and do for baby. It is not uncommon for nurses to ‘take over’ some of the parenting tasks. With the best intentions, this tendency to want to make memories to ‘give’ to parents is understandable. However, be aware that the more you do, the less they do. These limited experiences of touch and parenting are all they will have to hold onto of their time with baby.

4.Empowerment, guiding, and helping are more positive and productive than attempting to protect and rescue patients.

Analyze your attitude about your role in giving care. Offer care that promotes self-reliance, that is forthright, yet gentle. Empower them with information, stories of others, and guidance while not being the decision-maker yourself. And offer information-filled questions, not closed yes or no questions.

When it comes to physical care, the provider’s job is clear. However, when it comes to emotional and spiritual help, recognize that this is their journey, not yours. The decisions they ultimately make, the timeline and the healing they do (or do not do) in the days ahead are very personal to them. Instead of protecting them, or yourself, by averting tough topics or difficult information, be open and honest. Because they may have never walked this path, or even contemplated such life-altering decisions, they first need to be well-informed (see Principal #5). You can have a positive influence by the care you give and the wise facilitation you offer. Help them and love them through this; do not attempt to take away their pain or protect them from difficult information. You cannot be their rescuer. This is their journey, the good and the bad of it. Self-reliance, based upon your guidance and education, will increase their confidence and independence. You show the best care when you empower them to make intentional choices based on good information.

  1. Sincere efforts to fully inform patients prior to decision-making and navigating the journey promote thoughtful, personal choices which minimize regrets.

Ensure that patients are fully informed prior to any decision-making. Explain the ‘why’ (and pros/cons) of each option and decision that is ahead.  In order to make intentional choices that maximize memories and minimize regrets, the full story needs to be shared with patients. They need to be informed about all their choices and options, despite any controversy or uncomfortableness. Whether it is offering comprehensive information about the evaluation/autopsy of their baby or options such as seeing, authorizing testing or not of their miscarried baby…fully informed consent is the expectation and standard in the medical community. Parents need honesty, stories of others, and time to consider the short and longer term pros/cons and implications for each decision they make. Whether common law, legal, ethical, spiritual, personal, religious, or cultural, keeping choices and information from them makes them more vulnerable to regret decisions after the fact.

 

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