We should start by understanding death. The reality is that death comes for us all. It is the one thing in which we all ride the same storm. The way of our death may be different, but we all have an end. Most people will die knowing that they are dying. Sadly, most people will die with unfinished business. All too often, we avoid this conversation because no one wants to think about their loved one being gone. It hurts, it’s uncomfortable and it feels as if by discussing the end, we are inviting death. When the time comes to require decisions, many have no idea what their loved one would want in the end. If death occurs, the caregiver may be left with guilt or regret.
Did I make the decisions according to what my loved one wanted?
Did I honor their wishes?
I wish I had asked them earlier.
These are all statements I have heard from families in hospice.
The short answer to when is the right time to talk about the end is now. Right now. Life is fleeting, and no one is guaranteed tomorrow. Sit down, pour a cup of coffee, and have the conversation. Start with “what do you want?” Most of us have some idea of how we want to be treated and what we want done with our remains. Most of us want to know that we are not or will not become a burden to our families. The only way to ensure that your wishes are known is to talk about them now. Essentially, we cheat the patient and family out of the ability to express their wishes and desires for the end of life. Being unclear about their wants, eliminates the individuality that we all need and should have.
Hospice Care is a program that is designed using health care professionals, medications, and medical equipment, to provide individualized care to promote the quality and comfort of the patient while managing their end-of-life symptomology. To qualify for Hospice Care, the Centers for Medicare and Medicaid Service states that there must have a terminal illness with a life expectancy of less than 6 months if left to run its natural course. This must be verified through 2 doctors; typically, your regular doctor and the hospice medical director. The physicians are not only looking at the diagnosis but also the physical changes and contributing factors such as:
· Weight loss despite best efforts to gain weight
· Long term loss of appetite
· Frequent infections requiring medical interventions
· Frequent visits to the emergency room or doctor for treatment related to your diagnosis
· Blood laboratory results that show decline
· Physical changes such as increased fatigue and weakness
· Increased dependence on others for care
· Pain that is uncontrolled
Often, people assume that hospice is meant only for the last few days of life. However, when given the opportunity to receive longer-term care, the patient benefits from staff in many ways that can make each challenging day easier. The relationship established between patient, caregiver, and hospice ensures that the patient’s desired wishes are honored. Time is given to help the patient and family manage end-of-life issues and to tie up loose ends.
Time is often the enemy of the terminally ill. For example, an 80-year-old man is diagnosed with end-stage lung cancer. His oncologist offers a course of palliative chemotherapy to “buy him some time.” The patient spends his weeks, dependent on others for transportation to and from his treatments. When he returns home, he is sick from the chemotherapy, weak, and spends his time sleeping. He is immunosuppressed and misses out on several family occasions due to being too ill to attend. He passes away 6 weeks after his diagnosis, spending the last 7 days of his life on Hospice; bed-bound with minimal responses to his visitors.
Another patient with the same diagnosis declines the chemotherapy and starts immediately on Hospice Care. His family, with the help of the Hospice team, establishes a routine for round-the-clock care and is educated day by day on his ever-changing needs. His family spends every day with him, and he lives 3 months before he declines and is bedbound. He passes away having seen and spent time with his people routinely throughout his remaining days.
As the Director of Professional Services for Generations Hospice Care, I am often asked if deciding to “go” hospice is giving up or for those with no hope. Hospice is changing our idea of hope. Take the two men with lung cancer. The first patient hoped to buy time. He hoped that he could prolong the inevitable and his hope is not wrong. The second patient chose to forgo treatment and to prioritize his remaining days differently. His hope was not about living more days but by living the days out in comfort. Neither decision is wrong. However, by gearing the hope in a different way, the second patient and his family were given the gift of focusing on what matters in the end.
Hospice Care can be a gift in so many ways. If you or a loved one are struggling with a terminal diagnosis and have questions regarding hospice, we at Generations Hospice Care are here to help.