What Hospice is and What Hospice is Not

With as prevalent as hospice has become, many people still don’t know what it is. It is not a place; it is not round-the-clock nursing services; and especially it is not a way of hastening the end for people with incurable diseases.

In my experience, hospice is a type of expanded nursing service, providing support — medical, emotional, and practical — for patients and their families admitted to the service. (This may or may not be the mission of hospice — it is merely my impression and how I have used the services offered.) Although a large percentage of people on hospice are cancer patients who have less than six months to live, many people are on the service for several years — since hospice is about palliative care rather than curative treatment, many people suffering from incurable diseases are admitted to the service.

Hospice does not provide drugs intended to cure, but they provide medications to help make people comfortable, such as breathing treatments, diuretics, morphine for pain and breathing difficulties. (This drug service pleases me — it saves me the aggravation of having to deal with my father’s drug provider, especially when it comes to the breathing treatment. It’s expensive and they won’t pay for it, so they have to go through Medicare, which takes months. With hospice, I’ll get it within a week.)

cleanHospice is especially good for those who want to die at home, who have no ability or energy to visit their doctors at their offices, or who don’t want to have to deal with hospitals any more. (Often the “curative” care given in a hospital is taxing to a person on the edge of life, particularly when the doctors are trying to treat an untreatable disease, and in many cases, the patients are worse off when they leave than when they entered.) With hospice, patients still are technically under the auspices of a doctor, though most visits are from nurses and health aids. Other services are available with hospice, such as social worker and chaplain, in case either the patient or the family needs to talk. And there is respite care, generally a five-day stay in a hospice care center for the patient, to give the family member who is a caregiver a respite. (Jeff, my life mate/soul mate was admitted to a hospice care center for five days to give me a chance to catch up on my sleep. I didn’t sleep much at all while he was there, so it was a bit of a waste. Even worse, he never came home. He died on the fifth day.)

I am now going through my third experience with hospice, this time with my father. (My mother was first, Jeff second.) Oddly, I am in the strange position of having to reel in the juggernaut of hospice. They are geared up for the end, calling in a priest for an emergency visitation for my father, setting up all sorts of unnecessary services such as multiple visits from nurses (though there is nothing for them to do), offering me counseling services, sending cases of Ensure he will not drink. (Actually, he will drink it, but I won’t let him. He drinks the Ensure Plus, which offers more calories than the regular, and since Ensure is about his only source of nutrition and calories, and since he doesn’t want to drink six regular Ensure a day instead of the four Ensure Plus, I’m still buying the Plus to make sure he doesn’t starve.)

The reason we’re getting too many services too soon might be in the paperwork — in the submission papers, my father’s doctor said he had prostate cancer and had six months to live. Apparently his congestive heart failure and chronic obstructive pulmonary disease aren’t killing my father, but the truth is, neither is his prostate cancer. He’s had it for many years, and the urologist laughed it off, saying to come back when my father’s PSA readings are in the thousands instead of in the teens.

Still, my father has lost a lot of weight (that dang hospital stay!), so he’s a good candidate for hospice. It’s a comfort knowing that hospice is there if I need them. It gives me someone to call in an emergency. Gives my father the sense that someone in authority (rather than just me) is trying to get him to keep up his breathing treatments and to eat a bit. Gives him an alternative to going to the hospital.

25% percent of people admitted to hospice care die within the first four days for the simple reason that doctors themselves aren’t familiar enough with hospice to understand the service and so wait until the patients are too debilitated from “treatment” to benefit from hospice. On the other hand, more than a third of people admitted to hospice live long beyond the date of their expected demise because palliative care emphasizes the quality of whatever life is left.

Quality of life is always a worthwhile goal, even when — especially when — a person is at the end of their time.

***

Pat Bertram is the author of the suspense novels Light Bringer, More Deaths Than One, A Spark of Heavenly Fire, and Daughter Am I. Bertram is also the author of Grief: The Great Yearning, “an exquisite book, wrenching to read, and at the same time full of profound truths.” Connect with Pat on Google+. Like Pat on Facebook.

11 Responses to “What Hospice is and What Hospice is Not”

  1. rami ungar the writer Says:

    I was talking to my mother on Friday, she’s a chaplain and is going to become chaplain of hospice services soon. She said that, at least in the biz, hospice services exceeding six months usually has another name, thoughI can’t remember what it is. Still, I think it’s good your dad is getting helped with these services. And you deserve a break from it all.

  2. Paula Kaye Says:

    I have never heard those percentages about people dying within the first few days of entering Hospice. Holy Cow. But I do think that the main reason doctors do NOT recommend hospice is more than it takes it out of their hands. More doctors than I care to think suffer from that almighty “God complex” and have a terrible time saying they can’t fix every patient that comes to them. And think about the money they are losing as well. And sometimes, after a person enters hospice, and gets off all the medications that have thrown at them over the years from the doctors they actually get better and have more quality to their life. In my mind it is all about what the PATIENT wants. (and for those who think I am anti-doctor, I am a member of the medical field..a registered nurse.)

  3. Ana Luisa Says:

    I will be making that choice sometime soon. My father is 92 years old has dementia and parkinson. It hasn’t been easy, he sometimes sleep during the day and is awake all night. I work and my niece who is a nurse takes care of him during the day.
    Bless your father who is still mentally alert.

    • Pat Bertram Says:

      There are so many challenges in dealing with the aged, and you seem to have them all. It must be so very hard. I’m glad you have help, and hospice will be good for all of you.

      I hope you are taking care of yourself as well as your father.

  4. Carol Wuenschell Says:

    I’m glad you posted this. These are good things for people to understand. My father was never given a specific amount of time he was expected to live, but he clearly went on hospice because he thought his death was immanent (as in a matter of weeks.) He lasted 8 months and for much of that time was not very happy because I think he really wanted to be gone sooner.

    • Pat Bertram Says:

      I think a lot of people have the idea that hospice helps them die (probably because a lot of talk about assisted suicides arose around the same time that Hospice became so prevalent.) Also, when people sign up for hospice, they are often ready to go.

  5. Carol Says:

    Here in Canada I don’t think the system is much different. Hospice and palliative care are offered in one’s home, in the hospital, in a hospice facility or in other residential care. When my mother was admitted to the hospital with terminal cancer (at a young 64), after about four days she was moved from her room to a palliative care wing where she had a private room. I was able to come and go, have meals with her if I wanted, and stay overnight on a cot in her room. We knew from the start that it was a very aggressive form of cancer and she wouldn’t last long, and the staff were amazingly compassionate and helpful, both to her and to me, during the week or so before she died.

    My father, on the other hand, chose to move to an assisted living complex in later years, along with his wife (he had remarried), during the very early stage of his Alzheimer’s. They enjoyed the social community and the relative independence in their little apartment while getting daily medical supervision, and they liked the fact they had made their own choice about moving there. The complex was part of a two stage care facility that included a hospital at one end, the assisted living in the middle, and an extended care facility at the other end. When my father’s dementia worsened he was still able to be monitored in the controlled environment that was familiar to him. Unfortunately he ended up having a stroke and needed emergency hospital care, and he passed away from a second stroke while still there.

    Both parents received excellent but differing types of care and they were both content with it, which gave our family peace of mind. I haven’t experienced any in-home care situations but I should think it might be good for the patient but harder on the family. I hope the kinks you’ve experienced with the hospice people will soon iron out and the care provided will work well for your father and you.

    • Pat Bertram Says:

      Maybe they’re just too used to death. Maybe it’s no big deal to them. Still, I don’t want much from them, so it will make it easier in the long run.

    • Pat Bertram Says:

      We’re gradually getting the kinks worked out, finding the space between what is possible and what was promised. I’m trying to take each step as it comes. It’s how I’ve dealt with everything else, and it will work here, too.

      Thank you as always for your comment, Carol. I’ve always appreciated your wisdom.

  6. Pamela McMahon Says:

    My husband was placed on Hospice last December after suffering from a pulmonary embolism. He has dementia and has resided in the memory care unit of an assisted living facility for over 4 years. His hospital team recommended Hospice because the doctors felt that given his mental condition his quality of life would not improve with medical treatment. Once placed on hospice he was put in a wheel chair and never allowed to regain his strength. Consequently his muscles have atrophied and he can no longer walk or lift the fork or spoon to feed himself. No PT is provided during hospice because it is considered rehabilitative. He has not suffered a subsequent embolism yet and of course he is not on anticoagulation meds so he is at greater risk for another PE incident. His feet and ankles are always swollen. Because he is eating and relatively stable with regards to his weight and vital signs, Hospice is planning to discharge him which means he will also be exited from the Assisted Living facility since they are not designed for such immobile patients without hospice care. I have been advised to appeal the Hospice decision because the diagnosis and prognosis have not changed since his initial placement. The timing of his death of course may not be certain. My husband is in many ways worse off having been through hospice. Have you had other people comment about similar situations?

    • Pat Bertram Says:

      Oh, no. What a heartrending and tragic story. I have heard of such stories, though none as terrible as yours. I’ve never understood why PT isn’t considered palliative care. Surely being able to keep a bit of muscle control isn’t going to create havoc with their “no curative treatment” philosophy. Too much emphasis is given on weight and vital signs, especially with someone who has as many problems as your husband. I hope you are successful with your appeal. If someone “graduates” from hospice, it should be because they have gotten better, not because they have reached a stable weight.

      I am so sorry. I will be sending good thoughts your way, though I don’t know what good it will do.


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