Watching a recent interview with the filmmakers of the film “End Game” I was struck by a question from the interviewer. His question suggested to me a belief that still seems to exist here in the US about what a ‘normal’ or typical death would look like. The idea seems to be that dying in the hospital is still the default, with any other scenario being less common. This is not the truth in the modern world. Most folks die as the result of progressive illness or disease including the progressive global decline associated with old age. Since there is typically no medical intervention that is necessary to manage these diseases that requires ongoing hospitaliztion, care happens either in a facility or at home. The actual death most frequently happens in that setting as well. Should the person have chosen not to have a Do Not Resuscitate order, then they may be sent to the ER when death is imminent at which point the doctors and family would discuss appropriate care versus futile interventions. It is not uncommon for a patient to be discharged home with a DNR order even at that point. Hospital beds are intended for people requiring active interventions and medical support, and taking up a bed for a death has more disadvantages than advantages for the hospital. Some families understand this, and some do not – but ultimately medical care in this country is driven by reimbursement.
So if the plan will not be to die in a hospital bed, where then?
Care facilities of various kinds are a frequent choice. What type of facility and which will be determined by the level of care needed and the source of payment. Care level will range from Assisted Living where a person is independent but with assistance for things like meals and medications, up to a skilled nursing facility where nursing care is provided for things like wound care and IV medications. Most folks will fall somewhere in between as their needs increase and will require what is often referred to as custodial care. Essentially all the tasks of daily living like feeding, bathing, dressing, etc are provided but no skilled nursing interventions are required and medications can be taken orally. Memory care units, which have controlled access and exit are generally considered to be assisted living although they do provide more supervision than a typical assisted living facility. Some hospices provide dedicated hospice facilities for patients at end of life. These are often built for purpose with larger rooms and accommodation for families to stay with the patient as well as a very homelike environment.
Pricing for all the above is going to vary a lot, and payment options will vary as well depending upon the location and the specific circumstances of the patient and family. That was covered in more detail previously.
Finally, the option to go ‘home’ – whether that is the patient’s home or that of a family member. Care at home will be provided by family or by caregivers hired by the family. Assistance with medical needs can be provided either by home health or home hospice services, both of which will mean intermittent nursing visits as well as potentially having a bath aide to assist with bathing and a social worker to assist with resource identification and care planning. Both are covered by Medicare under different guidelines. The advantages to having hospice care, especially earlier in the process is the benefits provided by the team and the benefit including all equipment and medications related to the diagnosis delivered to the home in most cases. Having a team coordinating care can be a huge help to family caregivers. The best reason not to choose the hospice benefit would be if there were still medical interventions that are being done for comfort – examples would be palliative radiation treatments for bone metastasis, palliative blood transfusions and abdominal fluid taps to control ascites. Finding an agency that offers palliative care as well as hospice care would be ideal in that circumstance, but more commonly just finding a home hospice agency that also does home health care can be helpful in transitioning easily.
The biggest thing to keep in mind is that none of this is written in stone. You are not locked into any of these choices and changing your mind is simply a matter of logistics and paperwork. In some cases, a patient in the hospital can be ‘moved’ to inpatient hospice status simply via paperwork and never have to change beds.
It really boils down to talking with your family, physician and care team to help decide what option works best for you.