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Tay-Sachs, Canavan, Sandhoff, GM1 and related diseases

Philosophy of Care

Guiding You and Your Family
Tay-Sachs, Sandhoff, GM1 and Canavan Disease

A philosophy of care is a framework of care goals and values to help you make the best choices for your child and family. A spectrum of "philosophies of care" occur along a spectrum from less intervention to more technical approaches. The NTSAD family is non-judgmental and supports all care philosophies regardless of where they are in the spectrum. We truly believe there are no right or wrong choices; only the ones that work best for you and your family.

Why do I Need a Philosophy of Care?

The primary reason to develop your philosophy of care is so that you are prepared to make thoughtful decisions when crisis moments arise; it may be difficult to make decisions in the moment without a philosophy to guide you. Defining your care goals and values serve you very well throughout the life of your child and will enhance your communications with your healthcare team, including doctors and nurses.

How do I Find My Philosophy of Care?

Finding your philosophy of care is different for everyone. Some parents instinctively know what it is that they want their child's care to involve; others require time and thoughtfulness to absorb the barrage of information that comes with the diagnosis in order to consider all the options.

  • Get your child stable and comfortable - you can't find a framework of care if you are focusing on immediate issues
  • Clear your mind, focus on your breath and listen to your heart
  • Talk about it! Benefit from the experience of others by talking with your partner, pediatrician, hospice counselor, other families, clergy, family and close friends. Take advantage of the NTSAD Peer Support Group (PSG) and talk with families who have different philosophies and can share their experiences with you. Listening to others is a very helpful way to find what resonates with you.
  • Sleep on it for days - weeks - even a few months. You can also build your philosophy piece by piece over time.
  • Write it down! As goals and visions become clear, write them down. A Philosophy of Care will start to emerge.

The following are examples of philosophies of care. These are just examples intended to inspire and get your started. Your philosophy of care could be a mix and match or entirely different.

 

"Fewer Interventions" Philosophy of Care

The care goals for my child are:

  • To be as comfortable as possible
  • To be cared for at home as much as possible
  • To avoid the hospital and emergency room as much as possible
  • To avoid technical equipment and devices not designed expressly for comfort care

 

"More Technical Interventions" Philosophy of Care

The care goals for my child are:

  • To be as comfortable as possible
  • To utilize all that modern medicine offers to extend life as much as possible, including medical devices that are not designed expressly for comfort care
  • To go to the emergency room when necessary

 

"Mid-Spectrum" Philosophy of Care

The care goals for my child are:

  • To be as comfortable as possible
  • To be with his/her family as much as possible
  • To utilize modern medicine, including medical devices, when it doesn’t cause unwanted side-effects or discomfort

 

I have a Philosophy of Care, Now What?

After you've found a clear vision for your child's care, discuss it with your child's pediatrician. It is critically important that you both fully understand each other. Think of your child's healthcare providers as a team, the pediatrician as the captain and you as the coach. If the pediatrician or any member of the team isn't comfortable with your philosophy of care, find a different provider! Remember, you know what is best for your child and your family. When the team communicates and works well together, the quality of the child's care and the family's experience is vastly improved.

Can I Change My Philosophy of Care?

Absolutely! A philosophy of care is meant to guide you through difficult care decisions but isn't written in stone. This most frequently comes up when discussing feeding tubes (NG and G). Sometimes, when parents initially decide against a feeding tube, they find that decision too difficult to implement when their child's swallowing becomes a real issue. It is OK to adjust your philosophy of care; return to the initial process: get your child stable and comfortable; get your head and heart in a quiet place and listen.

You will know the right decision.

Recommended Resource

Cameron's Arc: Creating a Full Life a DVD & facilitators guide. Inspired by the lives and memories of first cousins Cameron and Hayden Lord (Tay-Sachs), the Lord Foundation partnered with the American Academy of Pediatrics (AAP) to produce the film Cameron's Arc: Creating a Full Life. Telling the Cameron Lord story, the DVD explores effective and rewarding parent-doctor communication across four critical junctures in the care of a terminally ill child: delivering the diagnosis, providing for anticipatory guidance, setting care goals and values, and transitioning at the end. If you would like to have this helpful resource, please contact the office at 1-800-906-8723 or This email address is being protected from spambots. You need JavaScript enabled to view it..

 

 

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