This is me with Nana Angelina.
Things are a little 'sketchy' with insurance and long-term care facilities at the end of life.
I wish to shine Light on the situation to educate you.
In The Old Country:
- the elderly lived at the home of their children.
- people accepted them but neither paid too much or too little attention to them.
- they were part of the family.
- neighbors took care of those without family.
- at some point they would stop eating.
- dehydration set in.
- kidneys failed.
- in four days death was inevitable.
- the body was prepared by the women of the village.
- it lay in state in the living room and guests paid their respects.
- there was a funeral and a get-together afterward.
In The Hospital When I Was A Medical Student:
- The disease was considered incurable and end-stage.
- A durable power of attorney (medical decision maker, sometime patient themselves) was consulted about 'ending the suffering'.
- Decision was made to put patient on a morphine drip (comfort measures) and keep patient DNR (do not resuscitate).
- Nurse sets the iv up and keeps dialing it up every two hours.
- About eight hours later, the patient is apneic (stops breathing).
- Family is notified (many times they are not present).
- Body is sent to morgue and death summary note is dictated. All forms are completed.
With My Father Four Years Ago (He was a member of a Big Box Hospital Organization):
- Pulmonary Fibrosis is diagnosed (this is terminal condition, only 'cure' is lung transplant, he is not eligible due to age).
- Patient is 'optimized' with pulmonologist as long as possible, and treated for any infections.
- Disease is 'advanced' and patient is put on 'Palliative Care' (it is not exactly Hospice--aggressive care and hospitalization is still sometimes an option--which is done 'in home'. I read the booklets and found 'Palliative Care' to be a very murky subject which is highly based on the definition of the primary health care provider--which might be different from another provider's interpretation).
- A reader who is a hospice RN defines 'Hospice' as 'withdrawal from aggressive care.
- Cost may enter into this decision-making process, just as with the family they are asked 'do you want to do heroics?', the business entity providing the care must decide the cost-to-benefit ratio of further intervention for the disease.
- To my experience in ICU, there is a point where the outcome is clearly evident to all except perhaps the family, who wish 'to have everything done'. We honor this, although there are times there is a 'slow code' done in name only, as the disease is overwhelming and end-stage. (If a critical care specialist says it is time for DNR, they are basing this judgement on medical knowledge only, and not finances.)
- Once on Palliative Care, a patient is offered experimental drugs (this accelerated his decline).
- Weekly visits by chaplain begin at the home.
- All medicines are sent to the house, including oxygen.
- Weekly nurse visits instead of trips to the doctor start.
- At 'sudden decompensation' on-call hospice nurse comes and remains at bedside giving sublingual doses of concentrated narcotics and drying agents and anti-anxiety meds until patient passes.
- Body is left at home as long as family wishes until one or two days (I forget) then mortuary comes for the body.
- embalming if desired.
- funeral if embalmed, family viewing only if not embalmed.
Death In The O.R.:
- Family and patient are informed of the risks before surgery by all members of care team--internist, surgeon, anesthesia, before going to surgery if risk is high.
- Often family and patient 'want their chance' at miracle 'save'.
- Sometimes quality of life is so bad patient has no other option (end-stage disease).
- Patient has 'event' and code blue is run by the O.R. team.
- Anesthesia is the one who says, 'Start chest compressions' and announces the code. If patient is prone a gurney is brought in and we flip them on their back. A big plastic dressing covers the wound before turning.
- ACLS protocol is followed to the letter, unless Power Of Attorney says, 'no this or no that'.
- The code is called, usually by joint decision by surgeon and anesthesiologist.*
- All lines are left in place and the coroner is called.
- Coroner always asks to speak to me if there was 'anything unusual'.
- Coroner decides whether to come in or not. They usually do. (my heart surgeon pulled out the breathing tube always for the family before the coroner came)
- Surgeon talks to family. I make it a point to be present.
- Body is take to part of hospital where family can view and say first 'goodbyes'.
- Body is taken to morgue and then to the mortuary when they arrive.
- There is a big plastic body bag that zips up. (one Trauma Tech in the ER, when they heard the call about the accident due to arrive, would sometimes put that on the gurney first to save a step. The back-board would roll over it like it would a sheet.)
- All the forms are filled out by the surgeons.
- Anesthesia is expected to go back to work on the next case immediately after all charting is documented. No time is given to process the event. I typically call the hospital chaplain for a brief consolation for about five minutes max, just for my mental health.
- * -- I see the spirit of the patient in the room during the code blue and mentally communicate with it.
With Nana 2013:
- Durable power of attorney is called to a meeting to discuss end of life care with social worker--family is welcome.
- hospice is offered early with promise 'she will have her own nurse!'
- Family declines due to satisfaction with current level of care and 'gut feeling about it'.
- Family learns medicare pays one-hundred percent for hospice, both to hospice organization and facility. (hospice utilization has increased over two hundred percent in last few years in CA).
- By my assessment, what is keeping Nana alive is the LVN who feeds her. She mixes ice cream milk, and nutrition shake together because she knows 'Nana likes sweets'. She is patient and reminds Nana several times each mouthful to swallow in a loud voice.
- What is also keeping Nana alive is the excellent nursing care that keeps her skin healthy--no bedsores.
- Mother does not like the roommate Nana has had for a year. She arranges a room transfer.
- Nurse that feeds Nana does not work on this side of the facility--it's a whole different nursing station.
- Nana 'stops eating' on Friday.
- The physician says, 'Stop feeding her she aspirates'.
- Mother signs a form that says, 'comfort measures but antibiotics and i.v. fluids' on Friday.
- Nana gets i.v. fluids for one day.
- The next day, with me, no fluids are given.
- Nana says she is hungry.
- She can't open her mouth to eat. She milkshake concoction just sits in her mouth. She only swallows once or twice, and takes in about half a small cup.
- She spikes a temperature, gets tachypneic (fast shallow breathing), and starts getting puffy (signs of renal failure)
- Hospice nurse assesses her and says, 'she does not look good'.
- In facility Hospice = one nurse a week with daily visits to 'check progress', facility nurses giving 'comfort medicines--same as dad--' every two hours, weekends get 'on call nurse'.
- In case of 'fast decline', on call nurse comes in but does NOT remain at bedside.
- There is discussion of 'cost sharing' that is $1800 a month to the family. (I call my sister who is in charge of financials)
- After family signs consent to Hospice (no iv fluids or antibiotics--they like them 'dry' for a more comfortable death process) there is a four hour delay until first medication is given.
At first try to CONVINCE them.
If that does not work, then try to CONFUSE them.
If that does not work, then CON them.
(an old Marketing aphorism)
My maid of honor at my first wedding was a Harvard Business School MBA. She said there are classes where they teach you how to manipulate people to do what is desired by management. Both for employees and for customers.
Guess who is running the show in Healthcare?
It ain't Obama!
I hope you see the truth in end-of-life care, and make the most of this wonderful gift to each other in the time there is left with your loved one.
Aloha and Mahalos,
P.S. if it is any comfort to you, here is a description of what happens in the body as it dies: http://reikidoc.blogspot.com/2012/07/energetic-look-at-death-what-you-need.html
This is Nana Angelina's favorite opera--I grew up listening to opera at her house
(Pagliacchi is the Italian word for 'clown'. )