A friend of mine mentioned the other day that they may need to get hospice for her early 90s father but she was afraid he would live longer than six months, so she wasn’t sure what to do. That is when I realized that I had a lot more hospice knowledge than I realized and maybe I needed to share it.  

To add to the confusion, palliative, comfort and hospice care are often interchanged or used together. Let’s take a step back. Curative care is where you are working to find a cure, recover or “get better”. Comfort care can be a part of that. It can ease pain or provide other forms of relief that enhance quality of life. But the goal is to overcome what is wrong and recover with Curative Care.

Palliative care’s main focus is to provide comfort and relief and hopefully improved quality of life. This type of care does not have a focus of cure, but comfort and relief. Because of this focus, it can be used alongside curative care and hospice care.

Hospice care is for when no cure is available, or treatment has stopped. For Medicare purposes it is a bit more complicated, and a doctor must sign off that life expectancy is expected to be less than 6 months. However, the person can recertify for hospice care if that 6 month period is exceeded. (My FIL aged out at least twice and was recertified).

Hospice care can take many different forms and locations. It can be a hospice facility, it can be a nurse that assists you with the person at home. It provides not only care for the patient, but also support and care for the care giver. Personally, I have been involved with Hospice care three times.

My father was dealing with congestive heart failure and other issues. They had done numerous prior surgeries. His quality of life was declining. He just wanted to be at home. I spent the day with him in the hospital as his wife worked tirelessly to get him home so he could be with her and his dog. He was in pain, he told me many times “I had no idea it would hurt this much. My heart broke each time. I sang to him and quietly cried. He was in and out of consciousness. And I was helpless. It was horrid. I advocated the best I could, but the comfort care just was not there at the time. Once she got him home and with hospice care, he was able to rest more comfortably and with them by his side he passed the next morning.

My mother had had more than a few small strokes and her kidneys were also shutting down. She had been in and out of the hospital. Each stay a little longer, each stay a little less that they could do for her. The last time, as her medical POA, I made the decision to switch from curative care to palliative/hospice care. That is another post for another day. Based on that decision, they told me that there was a hospice facility that had an opening nearby and would take her. As they moved her to the facility, I quickly cleaned out her nursing home room.

The facility was lovely. I wish she would have been conscious to see it. The staff was kind and attentive but not overly so. They made sure she was turned to not get bed sores. The dr on staff ordered a morphine pump, even though she was no longer conscious and instructed me how to use it, if I sense she was in discomfort. And they looked after me also. A pastor came in and asked if I wanted to pray, but no pressure. Another man came in and asked if I might like 15 min of Reiki to relax. There were guest shower facilities, that you could use if you were staying the entire time. Snacks in the main room if you were feeling a need for a bit to eat. They also said to feel free to leave and they would contact you immediately if things changed. (The more you go through this the more you start to see signs of end of life approaching; total aside but The Collective Regrets of Clover by Mikki Bremmer is a lovely novel that explores that aspect in insightful detail). It was just a very calm, peaceful surrounding to be with my mom as she passed.

My Mother-in-Law had battled three different types of cancer in her lifetime. She was a fighter. And like any good fighter (or if you are Kenny Rogers), she knew when to hold them, when to fold them, when to walk away and when to run. She knew the end was near and she did not want to be in the hospital for that. My husband and his sister moved mountains, fought hospital red tape and got her out and to SIL’s house. A hospice nurse was assigned and came to the house to discuss the drugs prescribed, dosage and other medical information to keep her comfortable. There is a 24-hour phone number to call for any questions at all and instructions on what to do when the loved one passes (fyi, they call time of death when they come out after you call. So do not freak out if you do not know that exact moment they pass or remember it in your grief, not a biggie)  

The big thing I learned this time was if they give you liquid morphine to give in a syringe and Ativan in pill form, crush the Ativan then mix that with the dose of morphine. Ativan must be bitter and the morphine disguises it. (rather than mixing the Ativan with water and doing two different syringes). Seems logical after the fact, did not occur to me the first time. Do keep track of the dosages if you can, makes it easier on the nurse when she comes back, but do not freak if your draw is a tad more or not exact. Comfort care. That is the focus.

Unfortunately, I think hospice care gets a bad name. For many it is seen as giving up or even at the extreme … Kevorkian.  But it isn’t, it really isn’t. It provides a support system for the person who is actively dying and for their caregivers. It makes the passing from this world more comfortable and gentler. It restores dignity.