This exchange took place earlier today on the thread about "choosing a date to die." I think it's clear that those of us who work in hospice need to work harder to educate not only the general public, but also fellow health care workers.
We withdraw fluids and nourishment allowing people to die slowly of dehydration and starvation. If they are alert we often forbid anything by mouth in fear of aspiration so no last meal. Some doctors and nurses are overly cautious of giving pain medications. We do a terminal wean on a ventilator patient to extubation and then try to decide whether the patient will die within the next hour or if they have to be moved to the floor to free up the ICU bed. The patients linger on and on. The family watches the patient gasps and gurgles. The family leaves the bedside stressed and often the patient dies alone. But, as long as we don't call our actions "assisted suicide" we can justify what we put these patients through.
As a health care PROFESSIONAL, that has provided hospice care to many patients ( my best friend included).. I can assure you I do not need educating by a non professional.
I have seen the scenarios I mentioned many times,in all settings . When the patient starts to shut down and refuses food or fluids.. in hospice the protocol is to no longer hydrate.
When difficulty swallowing is noted... food is withheld , wouldn't want them choking to death:rolleyes:.
Many times, once respirations become shallow or less than 10 bpm analgesia is held.
The terminal wean situation is a different scenario.
I am a strong supporter of hospice; however, I recently utilized their services for my mother. She broke her hip at 89 and became infected with VRE. Six months postop her incision burst open. Doc said only option was remove appliance, leave wound open, BR for about 6 months, then another hip replacement. Mom had been very active, and we knew she would not be able to endure 6 months of BR. She had a stroke also at 89 and often, when fully present, asked why we didn't let her die. So, we opted for hospice at home, her "paradise" . . . place in national forest overlooking large lake. She died of starvation (no appetite, even for ice cream pie) and dehydration after 10 days. It was horrible. Hospice left us some morphine (liquid to be put in juice, which she couldn't drink and which tasted terrible) and vistaril. I could only give her PO morphine, and Hospice had no recommendations for us. I was so very distressed and disappointed. At least at the hospital, she could've received IV meds. I went to my work place and got some syringes and needles, fully intent on giving my mom enough IM morphine to relieve whatever discomfort she was in even if it did suppress her respiration. She died when I left for the supplies. Maybe it is because we live in a rural area, but we did not get anything near the service duskyjewel described, which was what I expected. I would have unhesitatingly given her the meds Oregon uses after the first couple days of her being home.
Specializes in LTC,Hospice/palliative care,acute care.
We can ALL benefit from another's experience-nurse, cna or family member. To believe other wise is to close yourself off and limit yourself to forever doing things "your way". We have to be flexible and willing to learn.
I have learned that EVERY hospice has different protocols and all family members need to be strongly encouraged to ASK for help when needed. The previous post reveals this family member did not get that needed support and education (for starters, admin of S/L mso4) or was unable to internalize the info they received. People don't "starve",they dehydrate. Death isn't pretty,it smells and it's scary to watch. No one dies like Julia Roberts or Debra Winger.
I compare those last hours before my own mother died at home of cancer to transition during labor. I hit the wall, I felt like I just could NOT do it another minute,it was a panicky feeling. I came very close to calling an ambulance. Luckily a nurse friend arrived and was able to help me be the daughter for those last hours. I did NOT ask for the help and support from hospice at that time ,I can complain all I want that I did not receive it...I never asked.
When our patients can no longer take PO meds, they're routinely switched to subQ. I know our nurses have trained some family members in giving SQ meds. If a patient has to have IV meds, then either there will be much more frequent nurse visits or that's one way to justify continuous care.
I guess I need to remember that my hospice organization is top notch and that not all hospices do as well as we do.
FLAlleycat, I am so sorry about how your mother's care went. That's not the kind of memory we ever want anyone to have.
Working with pts on hospice, depending on the setting is different, and it depends on recommendations, stages of death, and settings.
This is a very hot topic because despite what is being said about hospice on this thread, there are others who have come forward on what their reality is; and that is different as well.
As a nurse, I have utilized every recommendation possible, especially in LTC; I'm also from the school of thought that hospice and DNR doesn't mean "do not treat".
There may be some misconceptions, however, in my educational, as well as my work experience, there has been an informative push; could there be more-absolutely, there's never enough education, however, we must take stock that a pts death journey is not smooth, and the major goal is that we do TRY to make them comfortable, even if that means taking away medications, extubations, withholding food and drink, and allowing the process to happen. The post that was quoted in a particular thread is what does happen in a hospital setting to pts on hospice on an acute care unit; it was pretty accurate to me because of my experience in acute care, especially when hospice has been opted in and death is imminent.
I think we have to be mindful that each persons journey is different, and that there is no clear cut protocol when it comes to hospice; heck what hospice "recommends" is sometimes what is already being done nursing and healthcare wise; nurses are cognizant of dying, and can rise to the challenge and institute nursing measures to help make the pt comfortable; in my experience, I have worked with many nursing peers, as well as myself who are pro-palliative and will suggest to the team recommendations; if hospice is a part of the conversation, it is encouraged, but is still up to the family and pt if they are able to make a determination.
I have performed comfort measures during times where the family was still deciding on hospice, and have died when the decision was made; those pts were positioned, cleaned, and given medications when they needed it, then if needed meds were taken away, positioning continued, mouth care and other non-pharmacological interventions continued until the last breath; family was always encouraged at the bedside during the experience as well.
As a health care PROFESSIONAL, that has provided hospice care to many patients ( my best friend included).. I can assure you I do not need educating by a non professional.
I have seen the scenarios I mentioned many times,in all settings . When the patient starts to shut down and refuses food or fluids.. in hospice the protocol is to no longer hydrate.
When difficulty swallowing is noted... food is withheld , wouldn't want them choking to death:rolleyes:.
Many times, once respirations become shallow or less than 10 bpm analgesia is held.
The terminal wean situation is a different scenario.
This goes against fundamental hospice standards. As a hospice professional, you participated in this? We don't withhold fluids, but we don't FORCE fluids to a pt that refuses them, either. Same goes for nutrition. If a patient is in pain, we don't hold medication due to RR being too low. It sounds to me like you should have been helping educate the so-called hospice professionals, if this is what you were witnessing.
As a health care PROFESSIONAL, that has provided hospice care to many patients ( my best friend included).. I can assure you I do not need educating by a non professional.
This statement makes me wonder just how much TRUE experience you have in actual hospice, because every hospice PROFESSIONAL I know would never show such disrespect to a hospice CNA. The CNA is an IMPORTANT member of the hospice team and no nurse I know would refer to ANY team member as a non-professional.
Do you show this kind of disrespect to all the CNAs you come in contact with?
Since a quote was taken from a post I made and used out of context to this subject, I am going to respond.
Not all hospices are the same. The protocols and preferences are often those of the Medical Director who can Institute his or her own beliefs into them. The same for palliative care physicians who may assist in various hospital situations.
We also have different names for sometimes the same thing and sometimes the names are used to skirt the real issue of dying. Comfort care, palliative care and even hospice can mean different things in different situations. Hospice does not always mean the patient will die immediately but can be used to improve the quality of life for several months and the patient may even out live their hospice program.
But, for the patients (including the young woman who is choosing her date to die) I was referring to, there is no more hope and further medical treatment is futile. We remove all forms of life support and hope for death to come quickly but it doesn't. They are trapped in a medical hell for who knows how long. They become one of several patients on a medical floor with whatever end of life term they are given and by whatever doctor determining their protocols or orders for comfort.
Not everyone is given the option of hospice. I have yet to have a hospice provider with me and the RN when we "pull the plug" and hope for the best which is for death to happen quickly.
I was also referring to the patients who want enough control over their lives to not be put through someone(s) else fighting over when to terminate their life. I think we all know how iron clad DNR papers are....not.
Hospice is great but even it has many variables which can affect how well it goes. If it was perfect we wouldn't have patients from hospice in ours ERs because of pain and shortness of breath. Many times these patients get intubated. I am not saying we shouldn't treat hospice patients for acute situations. However, I am saying right now if given given a choice about dying, I would prefer to not take the chance on so many varying opinions and protocols. Reading some of the posts in both discussions makes me even more sure of this.
Specializes in LTC,Hospice/palliative care,acute care.
Not all hospices are the same. The protocols and preferences are often those of the Medical Director who can Institute his or her own beliefs into them. The same for palliative care physicians who may assist in various hospital situations.
Not everyone is given the option of hospice. I have yet to have a hospice provider with me and the RN when we "pull the plug" and hope for the best which is for death to happen quickly.
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This is very true. And it's incumbent upon the patient and family to make sure theri wishes are known and followed.
Our largest local hospice company just recently began admitting vent patients to their inpatient unit for terminal weaning. The unit is across the street from the hospital-a short ambulance ride away.
That's the way it should be done. Not in some ICU.
Our largest local hospice company just recently began admitting vent patients to their inpatient unit for terminal weaning. The unit is across the street from the hospital-a short ambulance ride away.
That's the way it should be done. Not in some ICU.
That depends on the ventilator patient.
If they are already a long term ventilator/trach patient, Hospice is probably a good alternative or at least another option for consideration. But, it will also depend on the expertise of the nurses managing the ventilator. Death by the vent itself is not pretty.
Having an ETT (oral or nasal) in place such as in the ICU is uncomfortable. I doubt if any doctor will trach a patient who is a candidate for withdrawal of life support. The patient may also be on some hefty ventilator settings which would make transition to a homecare ventilator difficult. As long as the patient can stay in the ICU, we have medication options. But, it is sometimes hard to know exactly how a very air hungry patient will react regardless of meds once that tube is removed. However, the alternative of keeping a patient on a ventilator can lead to a very slow lingering death. Anyone who has worked in a subacute has probably seen that especially if they decided to do "comfort care".
Reading through some of the many discussions in this Hospice specialty section, it seems this area has many significant issues with staffing, medications and physicians (just like other areas) which back up the comment which was quoted and disagreed with in the original post.
I maintain my position that I want my opinion and my choice to be what determines how I deal with my own terminal illness which I hope to not have.
Been there,done that, ASN, RN
7,241 Posts
As a health care PROFESSIONAL, that has provided hospice care to many patients ( my best friend included).. I can assure you I do not need educating by a non professional.
I have seen the scenarios I mentioned many times,in all settings . When the patient starts to shut down and refuses food or fluids.. in hospice the protocol is to no longer hydrate.
When difficulty swallowing is noted... food is withheld , wouldn't want them choking to death:rolleyes:.
Many times, once respirations become shallow or less than 10 bpm analgesia is held.
The terminal wean situation is a different scenario.