For the sake of full disclosure, this author cannot speak for the healthcare systems in countries other than the United States.
What is Hospice?
According to the Google dictionary, hospice can be defined as follows: “Hospice: noun – a home providing care for the sick, especially the terminally ill.”
A better definition can be found atop the search results for the term:
“Hospice is specialized type of care for those facing a life-limiting illness, their families and their caregivers. Hospice care addresses the patient’s physical, emotional, social and spiritual needs.Hospice care also helps the patient’s family caregivers.”
In the US, Medicare (the government via taxpayers) pay for hospice, so there’s no incentive for doctors to refer patients to hospice. In face, we have the opposite problem — doctors are afraid to approach patients and their families about palliative care when circumstances dictate that palliative care is the most and most ethical of all potential care options.
If a patient still wants curative treatment or if there’s any way curative treatment MAY benefit your health or improve your condition, generally speaking, curative measures would continue to be administered in the US.
America has a very specific definition of who is eligible for hospice and palliative care that IMO is spot-on. First, the patient must have a terminal diagnosis. In order to receive hospice care in the US, the patient’s life-expectancy must be six months or less if the disease runs its normal course. Curative measures of any sort are strictly prohibited. Our problem in America is that people who are terminally ill continue to pursue curative treatments long after it has become clear (at least to the doctor) that such treatments are being administered in futility. The doctors sometimes (a lot of times) are so afraid of the conversation with the patient and family in which he or she explains that the patient will die, and that additional treatments will not help – that nothing more can be done to save the patient’s life that excruciating treatments and daily (or every other day) trips to the hospital long after the disease progression rendered these treatments potentially effective. People are enduring chemotherapy and radiation (among other treatments for other diseases, illnesses and conditions) for months after said treatments ceased to have any potential benefit, much less an actual benefit.
While the law states that the patient must have less than six months to live (provided the disease runs its normal progression), it’s rare for a patient to begin receiving palliative care until they have days left to live, maybe a week or two max. That means that for 5+ months, the patient was making regular trips for costly treatments with heinous side-effects instead of enjoying what time they have left on earth in a state of comfort and among family and loved ones (instead of doctors and nurses).
I personally see these situations as tragic. We as humans only die once. There are no do-overs. It’s something everyone experiences just once in life, so it’s pretty important to get it right the first time when it comes to death.
I know I’d rather be in a recliner surrounded by family and friends, receiving as much pain and anxiety medicine (the good kind) as necessary to ensure comfort than suffer for nearly six months fighting a losing battle, allowing delusion to convince myself that I’d survive whatever terminal disease was going to kill me in six months or less.
One additional difference between EGAN Hospice and some hospices worldwide, is that EGAN has both compassionate social workers and chaplains as part of the EGAN Hospice team. Every family meets them, and they’ll spend as much time as necessary helping loved ones cope with the loss. They’ll do this for over a year after the patient’s actual death at no cost to the family. Our nurses do their best to be mindful of the circumstances and behave appropriately, but they know they’re not counselors or spiritual advisers and that there are individuals on the team who are.
Since EGAN Home Health expanded to include EGAN Hospice, we’ve received nothing but positive feedback from patients (with one exception). In the aforementioned instance, the employee about whom the family complained was terminated immediately after it was determined that the patient’s family was being honest and that this employee’s conduct was unacceptable under any circumstances.
Home health companies that also provide hospice and have implemented successful AIM programs (advanced illness management) are helping increase the amount of time patients can enjoy thanks to palliative care, however not all home health agencies offer hospice, and AIM programs are notoriously difficult to implement and run effectively.
The bottom line is that the United States has a great system in place for caring for the terminally ill and helping their families cope with the grief associated with the death of a family member. The challenge has proven to be knowing when and how to break the news to the patient and his or her family that their loved one is terminally ill, and no known medical treatment will prevent them from not being alive six months from now.
Families of terminally ill individuals should initiate the conversation with the infirm in advance so that they’ve had time to come to terms with their situation when the time comes. Doing so would dramatically increase quality-of-life for millions of Americans every year and allow them to enjoy their final month(s) on earth.
Lastly, hospice is not code for euthanasia. Hospice companies are paid according to the length of time they care for an individual, so the hospice firm would much rather begin caring for an individual exactly six months before they die. The last thing they want is to have to spend a considerable amoount of mney on the admit and set-up, only for the person to die the following day. Thus, you can rest assured that hospice agencies won’t kill you or your loved one when they are brought in to provide care. When patients die within days of admittance to hospice, typically means the doctor and/or patients family made a months-long mistake of providing false hope in order to avoid a difficult conversation.