Baby Joseph home with family and breathing without mechanical assistance for his final days

Baby Joseph is now home in Canada with his family  to finish out however many days he has left. After all the fighting, he is breathing without mechanical assistance. Yes, he is still going to die because he has a terminal illness. The parents always understood that. They wanted a trach so he could be cared for at home during his final days. 

The Canadian health care  system disagreed and felt it was futile care , intrusive and perhaps unnecessarily painful to the patient. An international fight ensues. Allegation are hurled and people question the status and motives of the parents. People become offended on behalf of their country.  These are some of the issues we are going to have to wrestle through as technology allows the end of life treatment to be extended.  

But what is at the center of this....how much value does the human life have. This expense and care appears futile because he is not going to be cured. I feel that clearly over the years we have stopped valuing life and turned to a utilitarian viewpoint.  People that have to care for terminally ill people often have to make these hard decisions and accept the inevitability of death. Often the problem is that the family members are not ready to accept that. Let's hope that this tiny life is honored regardless of the status of his family and his final days are peaceful.