Leading the Fight to treat and cure
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? Put together your own  Care Team

 

 

 

Decisions start from Day One.

Grief counselor Nancy Frumer Styron discusses the range of decisions that parents face, right from the beginning: practical, logistical, financial, familial. And then throughout there are medical decisions that come up: feeding tubes, pain medication levels etc. And decisions about end-of-life: home or hospital. A mother reflects upon her fear that she wouldn't make the right decisions for her son, that the medicine would take over, but that ultimately she is proud of the decisions she made on her son's behalf.

Don’t underestimate the importance of your own goals and values

A palliative care doctor talks about the importance of providers' recognizing that parents have care goals for their child and that it is their job to help parents identify and vocalize them; a father of a child with leukodystrophy encourages parents to SAY what they want for their child. They will be heard.

 

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