What is Hospice and What Can I do to Support the Care of my Dying Loved One?

I have worked with hospice patients for many years. I have worked with some really compassionate care givers and some that should  seriously change jobs. 

There seems to be a lot of confusion about the work hospice, even amongst healthcare workers. Many people think that Hospice is the name of an organization. That is not correct. Other people think that is it the name of a benefit given by the government and that is a  little closer to the truth, but also not correct.

Hospice is a philosophy of care that believes is comfort care of the dying.

Whether or not someone gets hospice care depends on a variety of factors. One of the terms that you will hear, if your loved one is receiving hospice care is palliative care.

Palliative care is the type of care that the hospice philosophy is based on. This is ensuring the dignity, comfort and pain management of a dying person.

Most insurance, including medicare covers hospice care if you qualify.

This is all tied up in a bureaucratic mess and sometimes it works and sometimes it fails. I have seen people qualify for hospice care and then “live too long: past the expected time. Then their benefits were pulled and they no longer had hospice care.

Sometimes they re-qualify after a waiting period, and the doctor gives a new diagnosis and submits it ti hospice. I believe that the family has to go through the entire application process again.

Sadly I have seen people die without hospice care, even though they had it a month ago, because the paperwork did not go through in time to re-qualify them.

So, that is the aggravating part to me. There seems to be no rhyme or reason to some of the particular cases I have seen, I have noticed, however, that people with private insurance get treated better than people on medicaid. Surprise , surprise!

The idea of hospice care to keep the patient as comfortable as possible in every way.

Each patient that is approved for hospice will get certain supplies provided to them including but not limited to, a special bed with an air mattress that is designed to prevent pressure ulcers, an oxygen concentrator, a wheelchair, and basic cleaning and hygiene supplies.

Each case is assigned a hospice nurse to supervise the care.

The nurse will visit the patient intermittently and if the family requests her to. The nurse will supervise the nursing assistants who are the direct hands-on care for the patient.

Medications are prescribed by the doctor and overseen by the hospice nurse. If the patient is in a facility then the charge nurse is given directions by hospice on the medications to be given.

The usual medications available to a hospice patient are Roxanol, Morphine and Atropine.

Roxanol is given for anxiety and calming. All patients do not need this but the family can request it. Morphine is used for pain and most patients are given this as they get near the stage of active death and during active death. The family can request or deny the morphine, but usually it is standard.

Many patients develop a death rattle near the last few days prior to death.

The death rattle is caused by extra secretions of fluids and it sounds like they have fluid in their lungs and throat. This sound is often very disconcerting if you have never heard it before. I may make you feel like the patient is suffering or drowning.

But the death rattle does not hurt the patient or cause them nearly as much discomfort as it will sound like to you. The atropine does usually work to reduce the secretions and make the death rattle less disturbing to the family.

Each hospice patient is assigned nurse aides. How often they come depends again on your insurance, if the patient is home or in a facility, and also how close to death they are. Usually there is a nurse aid around the clock for patients that are in the last stage called active death.

Active death usually lasts for 3 days to a week, By this time the patient has stopped eating and has greatly reduced or stopped fluids. They are usually placed on oxygen for their comfort.

The nurse aid should be tending to changing their diaper and also turning them in the bed to a different position, every two hours. 

The turning and repositioning of a person that is bed ridden is very critical.

Pressure sores, also known as bedsores or pressure ulcers can develop in a matter of less than two hours of any pressure being on the same spot of skin.

The pressure sores usually occur on the bony parts of the body, where the most pressure is causes. Places like the backs of the heals, the elbows, and the bony areas of the spine are the most common areas for sores to happen.

Pressure sores can get very severe and their are 4 stages to them. They should be prevented but if they occur then they should be tended to in order for them not to turn into stage 2 or stage 3 ulcers.

Here is a link about pressure sores and the four stages. 

This is a link to more information about causes and treatment of pressure sores.

If left unattended, pressure sores will become so deep that the bone is exposed. As you can imagine this is extremely painful to person who is lying on the sore.

Once a pressure sore begins then the nurse to evaluate it, after an aide usually reports seeing it. The patient will be re-positioned more often and in the way that is directed by the nurse.

If a sore appears on the back of the heal, then the heals will be elevated on a pillow, but good aides know that it is best to do this before any sores happen. The pillow should be placed under the lower legs, leaving the heals in a “free floating” position in the air, and not touching anything.

If the sore is on the spine, then there are special ways that the hospice aide is trained to use pillows to position the person so that they are never lying directly on the sore.

Someone with a bed sore should NEVER be laid in a position that the sore is touching the bed, unless they are being changed or rolled into a new position.

There are also topical creams, patches and antiseptics that can be used to treat the area, depending on the directions given by the nurse, or a wound care specialist.

These are some of the aspects of care that are part of hospice. There are other things that are usually done in order to care for the whole person, including their emotional and mental aspects. There are also more things involved in the physical care, but I think I have given you a good basic idea here.

I will write a second post about hospice care and explain about other aspects of hospice care. The best thing you can do as a family member, about their physical care is to learn about hospice care to make sure that your loved one is receiving the proper care.

If they are in a facility like a nursing home, the more vigilant you are, the better care your loved one will receive.

This may be sad, but I can tell you that it is true, from years of working in nursing homes. I have been instructed before to spend more time on a certain patient because the family is expected to visit. 

Being the person that I am, I always gave equal care to all of my patients, but the directors and charge nurses are more concerned with the how the patient’s care looks to the families that are visiting the most, or the most likely to visit that day. People who had someone visiting them every day, always received the best care and the most attention.

If you cannot visit, then phone calls can also help. You can also send a friend who lives in the area to stop by. As long as the facility knows that someone is keeping an eye on them, then your loved one will be more likely to be cared for on a proper schedule at a nursing home.

Once there is an around the clock aide, when your loved one is near or in active death, then someone will be there to care for them all the time. 

This is a difficult journey for you, if you have a loved one who is dying. Hospice also usually offers help for you in dealing with the grieving process. If you need help, please ask them what services are available to you. 

Rosalie Died from Dementia…Trigger Warning Death and Dying

tw-sign6 trigger warning

I kissed a dead body tonight.

No, it is not pleasant.

Yes, it is disturbing.

And yes, your feelings at this moment of either disgust and horror… or morbid curiosity… are perfectly normal.

I pulled down the sheet that was covering her face. People cover the faces of dead bodies, because looking at death is disturbing, sad and disconcerting to most everyone, even if they work in healthcare.

I looked at her face, to see if it had any resemblance to the face that had smiled at me so many times.

It did. It was her face… but now… the life had gone out of her.  My Rosalie. My dear Rosalie lying there motionless. No longer really there. It was just an empty shell that her spirited, affectionate soul used to reside in.

Her eyes were still open a little. No one had known they were supposed to close them. I was not there when she died, or I would have done it.

The nurse aides working in that unit must not have known about the eyes, although…the nurse who examined her to confirm the death, should have known. She just did not care enough about the dignity of the patient to take one minute to close the eyes.

The eyes must be closed, very gently, with your hand. You gently brush downward over them, with your open hand and they will usually close …for the last time. But if this is not done within the first fifteen minutes, then they get stuck open, which is very disturbing to the family.

I don’t know what it is.. about the open eyes of a dead body that is disturbing to people. Perhaps the fact that the eyes seem to be staring at some. Or perhaps the knowledge that those eyes are no longer attached to a functioning brain that can process what they see.

They say that the eyes are the windows to the soul. Therefor if there is no soul residing in the body, what are the eyes windows to? Something other wordly? Have the eyes now becomes windows to death itself?

Perhaps that is what people feel.  The eyes of a dead person that were once the “widows to the soul”  are now windows to death itself.  Most people do not want to look into those windows, for fear of what they might see.

No one wants to believe that death is a reality, except  for some. Some  who have contemplated taking their own lives. Some who have had close brushed with death. And some others…

Even those people who accept death as part of life,  would have trouble looking into the eyes of a dead person. Are we all afraid of what we might see?  What secrets do the dead eyes hold that we are afraid of?

Well, I did look into her eyes and saw……

Nothing much. Just no life…

No one had arranged her body position either. For those of you who do not know…hopefully most of you…the body must be arranged into position within a half hour or so, of the death. Usually the arms are placed across the chest, in a cross, with the hands near the shoulders, like a cross shape or an X.

You can also arrange the hands in a position that looks natural and comfortable. What you do not , and should not do, is just leave the body in a random position. It should be in a position that looks like they are sleeping peacefully. In a relaxed sleep position, a person has relaxed arms and hands.

Once rigamortis sets in, the body can no longer be moved into position, without damaging the limbs. It is best to take care of all of these things right away, but the nurse just did not bother to do it. There is a lack of dignity in that.

So, I kissed her and told her I loved her and said good bye. I was done with what I wanted to do and tried to leave the room. I can tolerate that much, but I do not like to watch the body zipped into the bag. I find it very disturbing.

Yes, I said disturbing. Me..the one who kissed the dead body today…has a line … a boundary…of what is too disturbing, even for me,

But yes, the moving of the body off the bed onto the stretcher and then the zipping of the bag…Yes…very disturbing.

But I went back. …I don’t know why, but I did.

I went back into the room and not only watched the body being removed from the bed…but I actually assisted him in lifting the body and moving it.  I wanted to ensure that she was treated with the highest level of dignity possible.

Thank goodness, he did not have the zipper bag, This particular company did not do that. I was lucky for that. He had a velvet cloth that he covered the body with. It fitted over the body and around the edges of the stretcher. I did not have to hear the zipping of the bag, which brings back bad memories to me, from an incident in my past.

There are more circumstances surrounding this whole thing, which were even more upsetting and in fact , somewhat infuriating to me. The nurses were very callous, lazy and insensitive to me about the situation surrounding her death and the guy coming in to claim her.

I will write that out in another post. I hope that people headed my trigger warning on this post and that no one read this that should not have. Feel free to leave comments or questions about death and dying, if you have anything I might be able to explain.

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