Lying next to my dad in his hospital bed in our living room while he told me the secrets of the world is still as vivid and clear to me today as it was almost 27 years ago. I was 11 years old and he was dying of cancer. Every night I would wake up to him calling out for help; whether it was to go to the bathroom or because he needed to get a glass of milk. My dad, well he was stubborn, to say the least. He always had to do things himself. Together we would get what he needed to be done and then we would lay down in his bed and he would tell me everything he thought I needed to know before his time on this earth was done. Those moments are the ones that I will never forget. Those are the ones that I am most grateful for, and they never would have happened without hospice care in our home.
My end of life experience with my father at a young age created a path for me that I never would have imagined. I have worked in hospice for over 8 years now assisting many patients and families in transitioning through the end of life process. I have seen and heard many things throughout this time. One thing that never changes- “I wish I had known sooner about hospice”.
Ask Questions and Get Informed
When we are faced with health problems of our own or with those of our loved ones, it is easy to panic or to feel like our trusted primary physicians will lead us in the right decisions for care. As a society, we must stop relying solely on our medical community to assist in making the decision for us. We as consumers need to start ensuring we are informed on the services that are available to us. This can seem like a scary concept to some, but if we stop and think about it, it makes perfect sense.
If we were looking to buy a new car, a new washer and dryer, a new house, electronics, clothes, etc., would we buy the first item we came across? As a society, we do not hesitate to investigate different brands of household items before we purchase them or look for the best deals. We test drive multiple cars; we talk to friends, co-workers, and family members about their purchases or experiences before we make decisions and buy ourselves. Many of us read reviews on websites. We don’t rush into these decisions. However, in our healthcare decisions, the trends show that we don’t investigate, we don’t ask questions, and we don’t “shop around” to make sure we are getting the best services to “fit” our needs.
You have a choice
Hearing the hospice word the first time can be earth-shattering, and most people think that it means that you or your loved one are going to die within days or weeks. This can happen in certain situations but does not mean that it happens for everyone. When a person is approached with hospice care as an option, they should understand that hospice care is a choice in allowing one’s health to progress naturally without any invasive treatments. No cures are offered. The focus instead is on comfort, dignity, symptom management, and celebrating life. Hospice focuses not only on the patient but also the family. An integrated team of physicians, nurses, hospice aides, chaplains, social workers, bereavement support, and volunteers surround both the patient and their family to provide holistic care. Care is driven by you, the patient, and the family.
Electing to enroll in hospice care is also a choice. It is one that you or your family must decide and agree upon. No one can force you into this decision. But like any decision we make in our lives, do your research. Many of us have been with our primary care physician for many years. We trust them and look to them to tell us when we need to do something. Yet everyone should know that you do not have to wait for your physician to tell you that it is time for hospice. If you feel that you or your loved one does not want to seek treatment any longer for a health condition, it is appropriate for you to approach your doctor about hospice care. If you want a comfort only approach to care, you can ask to have this. This is your choice and your right.
Just like a person has a right to ask for hospice care when seeing their primary physician, they also have a choice on which hospice provider to receive services from. It does not matter if you are being offered hospice in a clinic or hospital setting. Nor does it matter if you have been with a healthcare system for many years who offer a continuum of care which includes hospice care. A person does not have to transition their end of life care to that clinic or hospital system’s hospice care program. Clinics and hospitals are to offer patients choices only if they ask due to the patient’s right to freedom of choice. There are many choices for hospice care and not every hospice care provider is the same. You should make the decision to be informed and see how each hospice program differs. What do they have to offer you and your loved ones? How do they support your needs?
Questions to Ask
What is covered? Where are services provided? What equipment and supplies will be covered? Are there any extra services that this hospice provides? (music therapy, pet therapy, massage therapy, Veteran programs, support groups, etc.)
Will you have the same people coming to see you every time? How often will they visit? When is the hospice team available? Do they come after hours, weekends, or holidays? How quickly do they respond when you call?
How will the hospice team manage your symptoms? What happens with your current medications? What happens if symptoms are not controlled?
How will the hospice team communicate and keep you and your family informed? Will you be involved in making decisions? Are you allowed to still see your primary doctor and how will they communicate with them? How do concerns get handled?
How will they support you and your loved ones during this time? How do they prepare you and your loved ones for what to expect?
The most important question to ask..
Why should you choose their services?
You have the power to choose who cares for your loved one
I knew while lying in bed with my dad on those nights that he was dying. The night before my mother sent him to the hospital, I knew it was going to be the last time I ever saw him. My father prepared me and filled me with the knowledge that death can be a beautiful process. It all just depends on the choices we make and how we not only want to live but die. Choosing hospice care, is not giving up. Choosing a plan for how you want to spend your last few years, months, weeks or days on this earth is an important decision. Don’t take it lightly. Don’t wait for someone else to tell you how to spend this time or who should provide you the care you need. Ask questions. Inform yourself. Know your options now. You have the power.
You have a choice. Use your voice.