Evaluating The Hospice Option

by Kim Keller

“I wished I’d known about hospice sooner.”

That’s what we often hear people say after they’ve been through the hospice experience.  We hear it all the time.

And we said the same thing in 2006.  Our dad spent only his last couple days in hospice, but we’re certain, in retrospect, that he would have been much more comfortable and at ease had we made the decision to go there sooner.

The fact is, we didn’t really know the truth about hospice — it was not brought up by anyone in the hospital, and we were scared off by the misinformed opinions we held at the time.

It’s now a mission of ours to let other people know about hospice as a viable option, about its philosophy of living out the end of one’s life with quality and dignity.  It’s our sincere hope that we’ll begin to hear people say, I’m so glad we got involved with hospice when we did.

Here’s what you need to know:

What is hospice?

Hospice care is for those who are nearing the end of their lives, and its focus is on comfort, which is known as palliative care.  We were drawn to hospice once we could finally acknowledge that there was no treatment plan to make our dad well again.  His suffering was great, and we were desperate to find him some relief.  Hospice was our answer.

The focus of his treatment switched from intravenous “curative” medications and hydration to prolong his life, to oral medications which would bring him comfort and peace.  Along with pain medication, he continued to take some of his other medications, such as antibiotics, that were considered essential to his comfort.  All other medications were stopped.  He was also given oxygen to ease his suffering.

Where do you receive hospice care?

There are four different places to receive hospice care: (1) at home with hospice nurses, as well as others who assist them, making visits during the week; (2) at many hospitals; (3) at a nursing home or assisted-living facility; or (4) at a hospice “home.”

We call it a hospice home, instead of a hospice facility, because the hospices we visited simply seemed like homes to us.  We chose a hospice home because our dad needed so much care, and we felt the hospital environment lacked peacefulness, lacked any semblance of serenity.

When is it time for hospice?

When it becomes clear that curative treatments are no longer helping, we recommend talking with your parent’s doctor to help all of you make this very painful and difficult decision.  Ultimately, a doctor will need to certify that your parent has six months or less to live.

Why would you choose hospice care?

Because if your parent is nearing death, and recovery is no longer a viable option, then the focus of comfort care in a hospice may be just the kind of peaceful option you require.  Hospice care also provides much-needed counseling for both the patient and the family, as well as grief counseling specifically for the family.  Our mom took full advantage of this.  Although she needed to be pushed to attend, she found the counseling invaluable to her healing process.

How do you begin?

  1. Explore the possibility of hospice care with your parent’s doctor.
  2. Ask your parent’s doctor to recommend another doctor you can speak with who deals with end-of-life issues (like a hospice doctor).
  3. Consider asking the hospice doctor to talk with your parent.
  4. Think about the best type of environment for your parent, whether it’s your home, a stay in a hospital, or a hospice home.
  5. If you consider a hospice home, then visit different locations and find one that would make your parent and your family comfortable.

Kim Keller is the co-founder of In Care of Dad.  She lives and works in New York City.

17 Responses to “Evaluating The Hospice Option”

  1. Donna says:

    Don’t know why Leave A Reply section requested my website to post comment. Here are my thoughts:

    When, most caregivers are recommended to have their loved one/s placed on hospice care, they may not fully understand the hospice philosophy. Caregivers, may think they understand and agree to the terms, conditions, and philosophy of hospice, but, when the patient’s “dance begins” the caregiver may find out they whole heartedly disagree with the mindset of hospice. Hospice, should be a remedy for a very short term. Hospice, will only make a patient comfortable. Remember this.

    Personally, I feel as if I am a walking encyclopedia on geriatric care. I have been taking care of my Mother for 27 years. Many of which years were through illnesses doctors told me that she was dying! Mother, was on hospice several times. Honestly speaking, and again, this decision should not be made casually. Know what you are getting into. Hospice, may sound like a good solution for a patient’s present situation. This type of care, will not treat another ailment should it arise. This “other ailment” may be life threatening if left untreated, or, undiagnosed killing the patient before the original disease that put them in hospice care to begin with. A patient, can be taken to the hospital, but, this almost always severs “hospice care”. In the meantime, the treated, the patient will be pain free and fine while still with the original disease that the caregiver put the patient in hospice for. (Hope this makes sense.) Hospice, will keep a patient comfortable with medication.

    If the decision has been “rightfully” made to utilize the services of this type of care, then, hospice is a wonderful tool in the final days making the transition easier for the patient and all involved in the patients care. Additionally, when the patient passes away, there is a 13 month support system for the patient’s loved one/s where they can get help to cope with the loss and grieving.

    All of the above is just my opinion based upon my experience. Hope this helps others……Donna

  2. kim says:

    Donna, thank you so much for sharing your insight concerning hospice care. Your points are well taken, and we appreciate your sharing them with our readers. Kim

  3. Gail Smith says:

    My comments about Hospice:

    My father, at age 88, went into palliative care (after 2 brain tumors were removed, metastatic stage 4 lung cancer and other areas. After he received 20 radiation treatments on his head the only other ongoing treatment option was gamma ray. Dad chose not to. He wasn’t interested in chemo with his oncologist either. I can’t believe it was even an option.

    As his daughter and Medical Power of Attorney, I am a very pro-active person. It was up to me to contact Hospice. I wanted to find out what they provided, establish the vital records, and all the necessary set-up for the eventual. They confirmed to me that they are usually called to step in too late. So with that in mind, I wanted to see if what they had to offer concerning maintaining the quality of life. Dad was a quiet type, and lived with his wife with Alzheimer’s in an apartment at an assisted living facility in Morro Bay, CA. Then I told his Dr. about my findings and research with Hospice.

    Dad’s Dr. became VERY UPSET with me and told me NOT to tell him. The Dr’s manner indicated to me that this was a death sentence and for him not to hear that word. Well, I think it is up to the individual. My father was a Dentist and a smart man wanting to know everything that was happening to him each step of the way. I wasn’t going to hold anything back. Dad would sit for hours and hours each day in and day out in the common area at the Assisted Living (VERY NICE) in the fireplace room waiting for his 3 meals in the dining room. He had no one to talk with or socialize with. Very few men and mostly women. He was married and they were all trying to hit on him. Hospice has volunteers that will come and play cards, music, and even take on outings. I thought this would lift his spirits. Just to know there are all kinds of volunteers who each have a wonderful gift of compassion. I lived 250 miles south in So. Cal. I could only go up every 3 weeks. For 10 months I did just that.

    Hospice Partners of the Central Coast were “wonderful”. Social Worker Elaine Kilpatrick. Miriam, his nurse. Rob the Volunteer Coordinator. Patti Frawley, volunteer. I just cannot say enough about this organization. Rabbi Jayne Simon gave my dad a tiny menorah last year on this day, 1 month before he passed (Jan. 7, 2012). He had a piece of happiness. That’s what truly matters.

    Hospice has sent me letters 3 mos., 6 mos., 9 mos., with caring and kindness, grief helps and I may utilize them for 13 months after his passing.

    I cannot help but think that once a patient goes into Hospice, the Medicare funding goes from the Dr.’s to Hospice. I would hate to think things like that are driven by money.

    Thanks for reading this.

    Gail Smith

  4. Gail Smith says:

    One more thing. When my dad took a fall, and took the turn… after he was admitted into skilled nursing, he seemed so confused as why there were hospital staff and then also Hospice workers.

    God only knows for sure. But in my heart of hearts, I feel that if he had a better understanding of how compassionate the care is with Hospice, it might have been easier for him. I also feel that his Dr. could have helped him through it and answered questions. Fear is a powerful thing.

  5. Interesting information. Hospice care also provides much-needed counseling for both the patient and the family, as well as grief counseling specifically for the family.