When the man that you have been married to for 35 years, and whom you love with all of your heart and soul, is gravely ill, you are numb and filled with heartache like you have never felt before.  I went from a confident woman able to make important decisions to a woman who was lost, alone, and unsure of even the simplest thing.  I no longer trusted my judgment – my world had been devastated, and I was emotionally and physically exhausted.

So, when I was asked to make a decision about in-hospital hospice care for my husband, all I could do was to rely on the expertise of the doctors and nurses who were caring for him.  They recommended in-hospital hospice care, and gave me a booklet to read that outlined what hospice care consisted of, and what services they would be providing for my dying husband.

I remember that there was a contract that had to be signed outlining costs and services, and I remember thinking about all of the red-tape and how everything is a business – even dying.  I wasn’t very knowledgeable about hospice care.

I didn’t know what questions to ask.  I relied solely on their recommendations.  I felt that if they recommended it then that was the way to go – there wasn’t any time to get someone’s opinion or do a little research about it; I just had to make a decision.

So I said, “Yes.”  My husband was in hospice care for about a week.  He was in a coma as his body shut down.  It was a week that I will never be able to get out of my mind.  I was saying good-bye to the man that I loved deeply; it was a week filled with extreme heartache and pain.

Knowing what I know now, my decision would have been different.  I would have chosen not to have hospice care for my husband in the hospital.  He was put in the cancer ward of the hospital and the hospice care was an additional service that was done by a subcontractor.

I found the hospice care to be just another layer in an extremely flawed health care system.  The caseworker was inept, slovenly, and showed little compassion towards us, and the minister although friendly offered little in the way of compassion as well.  All this came at a time when all I wanted was to do was to take care of my husband, make sure that he wasn’t in any pain, be with him, touch him, hold him, and love him for as long as I could…until he took his last breath.

Yes, if I could go back in time and make that decision over again, I would have chosen not to have hospice care.  I know that many people speak highly of hospice and the care that is given; this was not my experience.  Perhaps if you are home and the care is being provided there it is different.  (But in-hospital hospice care seemed to be just another layer in the system.)

What could they have done differently?  Perhaps, the hospital administration could have explained the process more thoroughly.  (I really didn’t see any value to their service other than to see that he was being taken care of – certainly I was capable of that.)

Also, I feel that the caseworkers from the hospice contractor need to have sensitivity training on a regular basis, so that they can deal with a grieving family in an appropriate manner.  I also feel that management should make sure that their employees are well kept and represent their service well.

As I look back, the best care that my husband received was from the skilled, dedicated, and compassionate nurses who took care of him in his final days.  Without their dedication and compassion, and knowing that they were taking good care of him I never would have survived the unbearable pain of losing my husband.

Paula Ezop 2011