No one with a sincere care for someone ever wants to deal with having detailed discussions regarding end of life care for another, much less for themselves. However, the reality is our society is inundated with various legal procedures and requirements that all come into play regarding how a person should be cared for in their last days and who has authority to make various decisions. As a result, having an end of life care plan is probably about just as smart a strategy as having a will and estate plan.
What is End of Life Care?
You’ve probably heard the word when a relative or grandparent reaches their very senior years: hospice. It’s an odd reference; unlike other medical terms it doesn’t really give you a sense of what the word stands for. Some mistake it for some version of hospital care which is incorrect.
End of life care comes into play when doctors and medical care determine that a person generally can’t be helped or cured anymore and the condition or ailment is terminal. In some cases the person may still be able-bodied and capable of function on their own. Frequently, in other cases the patient is incapacitated or requires ongoing assistance while still alive.
The care involved typically aims to maintain the comfort of the patient. This can include medication delivery, procedures and practices to reduce pain, and monitoring. Frequently, patients nearing end of life have nausea, gastrointestinal issues, and difficulty breathing. It can be painful simply to function, to eat, or to sleep. The care provided helps the patient through this last period until he or she finally passes away.
End of life care isn’t just limited to physical treatment either. It can include counseling and mental comfort, religious guidance, and family communication assistance. Since everybody has different situations, end of life care tends to be provided on a case by case basis, to best fit the needs of the given patient.
Types of Care
As we noted earlier, hospice is the term that most frequently comes to mind with end of life care. Hospice specifically is an assisted living service provided specifically for patients nearing death or in terminal care. Most hospice admittees are generally understood to have maybe days or weeks of life before passing away.
The unique feature of hospice is that it still provides the access to significant medical care and treatment, almost as much as provided in a hospital. However, given that the patient’s condition is terminal, the care is designed to reduce pain rather than to improve or cure. So the extent of medical care towards improvement is limited.
The social aspects of hospice allow people to pass away with their family without the significant discomfort of pain and watching someone die in pain. Counseling, assistance, and guidance are all standard services in hospice and for loved ones as well.
Frequently, hospice is provided at home rather than in an institution. Many times the cost of a tenancy in an institution is impossible or prohibitive given a patient’s remaining estate or relatives’ financial means, so assistance can be provided at home for far less cost.
Hospice is not just limited to senior citizen patients. It can be utilized for any patient in a terminal situation, regardless of age or condition. Finally, Hospice is considered an eligible medical expense both under health insurance program and government assistance programs.
Pronounced as PAH-LEE-UH-TIVE care, this approach focuses on addressing the symptoms of a patient. It is a subset of hospice care and has been made available to terminal patients for at least three decades to date. The goals tend to sound the same as general hospice, improving the last days of a patient and supporting related family during and after the patient’s passing. However, the significant difference is the timing.
Hospice care is usually provided as last phase or step in the treatment of a terminal patient. People discuss hospice and hire such services when the patient’s doctor has made it clear nothing further can be done for the patient and time is short.
Palliative care doesn’t need to wait for a determination. In a terminal or seriously ill situation, palliative care can start at first diagnosis and identification.
Frequent Questions about End of Life Care
Probably the most common first question most doctors hear after a determination is how long a terminal patient has to live. And it’s a guessing game. Sometimes medical personnel can provide fairly good estimates given a condition status; at other times doctors are judging from textbook statistics and ranges at best. No one can accurately pinpoint a particular day of the week on the calendar will be the day every time. The science of medicine is just not that accurate.
Further, don’t be surprised if doctors don’t want to give a firm date. Given the environment of malpractice litigation they live in, getting too specific can get a well-meaning doctor into a lot of trouble with lawyers and lawsuits. People can get very angry when a definite answer turns not to be correct, and lawyers make money off of people’s emotions.
When a Professional Assistant is Needed
Very often professional end of life care is necessary when skilled medical assistance is required to care for a terminal patient. This type of assistance can involved a number of activities only trained and certified medical personnel are allow to provide. In other cases, it can be just general assistance that does not require special qualifications. Professional care-givers are trained in both.
What Will be Looked For
Death comes to each of us in a different way. However, with end of life care, there are patterns of physical reactions that can be categorized and used as warning signs that the end is near for someone’s life. Many times these symptoms in and of themselves would not signal much, but together and in context they are clear indicators. End of life care becomes critical in interpreting these physical signs so that both the patient and his or her family know what to expect next.
These signs include:
Sleepiness or almost constant sleeping without much response. Many seniors close to death are known to sleep for very long periods with only an hour or two of conscious time.
Confusion and loss of mental acuity about time, place and short memory events.
Inability to function socially and a tendency to withdraw. Decreased circulation makes it harder to think and communicate thus affected patients tend to withdraw to avoid embarrassment and confusion.
Loss or decrease in eating and drinking.
Loss of internal control with urination and gastrointestinal functions.
Loss of kidney function evidenced by inability to urinate or dark urine. Frequently this ends up requiring the use of a catheter and medical assistance.
Extremities become cold and lose health color. The cause is generally decreased circulation as the body is struggling to maintain core body areas.
Inability to breathe freely and without assistance. Very often fluid in the lungs and losing strength will be evidenced by breathing problems.
Passing out or loss of consciousness. Weak circulatory strength will result in passing out, especially under external temperature conditions where the body has to work harder.
Legal Aspects of End of Life Care
Another aspect of care for a terminal patient involves legalities. Who is in charge to make decision for medical, life, and financial matters when the patient can no longer do so? Three legal documents become very powerful in these instances. They are:
A living will – a document that specifies how your medical treatment for life-sustaining care should be handled when you are no longer able to decide for yourself.
Medical power of attorney – a document that gives another person power to decide your medical care when you cannot.
Power of attorney – a legal document that transfer authority to another person to decide your legal and financial matters for you.
In some cases these legalities become even more formalized by the courts through what is called a guardianship. In such instances, the court specifies who will make all of the above decisions for a patient who can no longer do so on their own.
An end of life care plan should also have your wishes specified for how much effort you want performed when you do begin to pass away. Clearly, some of those decisions are made if you agree to a hospice or palliative care program. However, so many patients assume health care, the decision gets taken over by paramedics and doctors when something goes wrong.
End of life care can be very confusing and failing to make the right plans or any plans for the final event can create significant difficulties later on. That said, a person can easily avoid these problems for themselves and loved ones by having an end of life care plan. This requires some self-education in what medical programs are covered, what the government provides through Medicare, and how your own assets should be utilized.
It also requires some legal planning to make decisions so others don’t have to later on. Having all these elements in place will make your end of life care easier when it is needed and will save your loved ones from many of the frustrations of having to make last-minute decisions.
The Costs and Financial Aspects
We know the message well: health care today is extremely expensive. In fact, numerically U.S. health care dollars spent have grown by 100 percent each decade over the last 40 years. Thus a $100 charge in years past is now $1,600 and ready to double again.
The reality is that many Americans have no idea how to pay for health care costs for regular medical support, much less how to pay for expensive end of life care either. Despite all our technology and scientific breakthroughs in the world of medicine, we are quickly becoming a nation similar to the days when end of life care happened as it did in old prairie towns: you die in the bed you sleep in if you’re lucky with your family as the care givers. However, unlike the old days, family members all work just bring in the money to pay the bills and pay the rent. So they can’t stay home to provide care. Thus the quandary: no one can pay for the care and no one can afford to stay home to provide the care.
Part of the problem in finances is that generally we are a people of poor planning. A large percentage of seniors have no plans in place of how their end of life care should take place and how it should be addressed by their estate. Further, many seniors don’t have much of an estate beyond Medicare and Social Security, and are left hoping their family will step to provide the missing support.
As we noted earlier, Medicare and many health plans will support hospice benefits. But these benefits all come with caps and limitations. So there can be large difference between what a patient thinks they will get and what is actually paid for. That said, Medicare does provide financial assistance in addressing physical services, bereavement services, and support. There are restrictions; for instance, palliative care is available if terminal patients agree to forgo further treatments in attempts to cure conditions.
Medicare also provides assistance other than hospice for patients who are terminal. Skilled nursing options and hospital in-patient status are also viable under certain conditions. That said, various other programs and benefits provided in hospice are not available through other Medicare programs. So, for instance, bereavement support would drop off. In addition, Medicare will provide some services such as prescription support in skilled nursing facilities whereas the same diet pills support doesn’t exist for situations with home care.
Long story short: you need to study Medicare and its available benefits for your own specific situation when designing your end of life care plan. Depending on your needs and wants, various Medicare programs will cover some aspects, but in most cases you will need some other kind of support to complete the picture.