Hospice is a gift for the family. I’ve seen the experiences of families caring for loved ones with hospice, and without hospice, and I’ll advocate for hospice all day long. Having mentioned what a gift it can be, I must say that with the wrong hospice, it can also be a nightmare and leave families with feelings of long-lasting guilt.
Regardless of whether a terminal illness is suddenly diagnosed, or if the person has been in Home Health or Palliative Care for a while, when the time has come that your loved one requires hospice care it can be an emotionally challenging experience. Family members are suddenly immersed in an intimate collaboration with hospice caregivers inside the loved one’s home. Because of these very personal interactions between the loved one, the hospice care team, and the family members, this delicate period of time can be stressful and surprisingly uplifting.
During a recent conversation with someone whose husband had passed after two different hospice companies cared for him, she shared some very revealing insights, I asked for her permission to share those with you. We can all learn from her experience.
Q: Thank you so much for agreeing to share your own real-life experience with hospice care. Overall, how would you describe the hospice experience?
A: Well, unfortunately, our experience with hospice didn’t start off so well. While my husband was still in the hospital, shortly after the doctor informed us of the change in the level of care, a hospice representative kind of just appeared in our room. Although we were aware of the need to transition to hospice care, we sure didn’t expect a provider to be selected for us. Being so rushed with the decision-making process was a big mistake, as it didn’t provide enough time to research this particular hospice agency.
So, we found out the hard way that they were nothing like the company they had represented to us that day in the hospital room. There, they had assured us that they would be taking care of all medications and equipment being delivered to the home, and that I, as my husband’s primary caregiver for the past 14 months, would enjoy the help hospice would provide me.
To make a long story short, after about five days of sheer incompetence, such as morphine not being delivered, equipment delays, learning that they would not be administering any of the 18 medications (that still fell on me), and that much of what we thought was included in the care would have to be outsourced, we terminated their services. Having to switch hospice providers when my husband was so ill was very disruptive for him and for us all.
Q: So sorry to hear, that’s a great deal of stress at a time you didn’t need more on top of what you already had. Hopefully, your next provider was a more positive experience?
A: Definitely—a 180-degree difference! The replacement hospice care team was compassionate, competent, and much more helpful overall. I actually did begin to feel some of the burden shifted off of my shoulders once this team joined our family. It was a huge relief to have a qualified hospice agency on board, as my husband’s condition was rapidly declining.
Q: I know how difficult it is to witness someone you love nearing the end of their life, I’ve been there. In what ways did hospice add some peace to those final days?
A: The hospice team we had was just wonderful. I always felt totally comfortable with the caregivers in our home, and they came to feel like family to us. Even though I was enduring the pain of losing my man, a couple of simply beautiful moments stand out in my memory regarding our hospice caregivers.
One evening, our hospice aide, Ernan, who was from Peru, offered to make us dinner. He carried in two grocery bags filled with ingredients—totally surprised us! While my husband was sleeping, Ernan was busy in the kitchen preparing a feast for us. He prepared a Peruvian stir-fry dish called Lomo Saltado that was absolutely amazing. Thankfully, I jotted down the recipe while he cooked, and was so happy to find it amongst my recipes just recently. Seeing this recipe with “Ernan’s Peruvian Lomo Saltado” scrawled at the top just warmed my heart as it brought back that memory. He was such a gracious and kind person to go to all this trouble for his “family.”
Another fond memory about our hospice experience occurred the day before my husband passed away. He was in and out of consciousness that day, so we knew it wouldn’t be long. A member of the hospice team arrived that morning to care for him. When I entered our room mid-morning, I witnessed the most beautiful scene. There was the hospice caregiver gently giving my husband a manicure. There was just so much thoughtful care in that simple act of massaging his hands with lotion and filing his nails. These special moments help to soften the sad experience of loss.
Q: I love that story. I started my journey in end-of-life care as a hospice volunteer, and what you just shared is an accurate picture of the care that a best hospice provides. These days as CEO of SilverStone Hospice there’s not a day that goes by without stories of acts of love by our team that truly brings happy tears, I almost want to shift our conversation to that, but I must ask, were there any sad moments you would like to share?
A: Well, of course the entire experience is sad. I guess that is a given. But regarding the role of hospice, the company you select can either lessen that emotional pain or add to it. Any sadness I experienced was due to the lack of competence of that first hospice company. To see my man in pain because they had failed to deliver his morphine was just so terrible. I felt utterly powerless to help him. I was sad for him, because he deserved better. He should have received the very best of care.
Q: Given that negative event, what would you do differently if you could do it all over again?
A: I would caution anyone to not be pressured into selecting a hospice company while your loved one is in the hospital. The hospitals must have agreements with certain hospice agencies so they just send the representatives in at your most vulnerable moment. Resist that. Accept their materials and tell them you will be researching other hospice providers before making a decision. This buys you time to ask your doctors, your friends and relatives for first-hand referrals.
Q: I agree with you. While at SilverStone Hospice we are a top choice for several hospitals, we ensure people know they have the right to choose any hospice company of their desire based on the family or personal research and honoring the right to choose. Every family should research at least 3 hospices before making a decision. What do you wish you knew before selecting a hospice?
A: Again, that first hospice company totally misled us about what was included in hospice care. They know you are exhausted so they tell you what you want to hear. The reality was, after we selected them, that they would not be dispensing medications and that, even though he was a terminal leukemia patient, they would only be providing a few hours of care daily after the first 48 hours. We would only see the doctor once a week, and also that we would have to hire someone else for his personal care. These were total surprises to me. So, be sure to understand clearly what hospice care includes and what it does not include so you can plan accordingly.
Q: You don’t have to agree with me, but based on your experience, would you consider hospice a gift? If so, why?
A: Hospice care, when provided by a quality company, is absolutely a gift. The people that helped us through the passing of my beautiful man were so kind and gracious. They provided little booklets to help me prepare for what to expect in the last days of life. The social worker who was assigned to our family helped us with the emotional aspects of loss, as well as the logistical details. I can look back and say that hospice care felt like a nice, warm blanket.