Written By : Jackie Zinkgraf
When you or a loved one is faced with a terminal illness it feels like the world is sinking beneath your feet. It seems like nothing is going right and no one is there to help. You feel a plethora of feelings surface, both emotionally and physically. Hospice is something that can help you through not only the emotional feelings but also the physical symptoms.
Hospice may sound scary. For one moment take all the things you know about hospice and let go of them. Most of the rumors floating around about hospice are just that, rumors! I know that when the doctor mentions hospice, the immediate thought was that you or your loved one have but a few days left to live. The truth is that a doctor will suggest hospice if a person has been diagnosed with a terminal illness and, given the natural course of the illness, the life expectancy is less than 6 months. Sometimes people do sign on to hospice and only live a few days, but others sign on and live for a year or more. Many may sign on and “graduate” because of improvement and no longer meet hospice criteria.
The next rumor about hospice is that it’s a “place”. When hospice first started it was a place; however today it is a philosophy of care. Some people receive care in an in-patient hospice, but most receive care in their own home, in a skilled nursing facility or in an assisted living facility. Hospice care involves an entire team of people who have great expertise around death and dying. This team is made up of a Nurse, a Certified Nurse Aid, a Social Worker and a Chaplain. Each hospice has at least one Medical Director who oversees the care of each patient and who is always available to write orders for medications or to be the patient’s doctor if the primary physician is unable to do so. This means that while your loved one is under hospice care and needs a physician, the Medical Director can visit you IN your home. Depending on the size of the hospice, they may also have a nurse practitioner. Each hospice has a Volunteer Program. Some have a large variety of volunteers such as pet therapists, music therapists, aroma therapists, and 11th hour volunteers. 11th hour volunteers sit with patients during their last hours if the family wants someone to be there. The volunteers can walk your dogs, help with laundry and much more. This team approach is called an interdisciplinary team. This means that the team works together and with each other, so the nurse and the chaplain work together to find the best way to keep someone comfortable at the end of life. Some people may only have physical pain, others may have emotional pain and fear and some may experience both. Having a team caring for your loved is a more effective way to understand and fulfill the needs of a loved one, than if one individual was caring for them.
Hospice provides a lot more than just care. Hospice provides medical equipment, medical supplies and medication to manage the symptoms of the terminal illness and to ensure comfort, retain the individuals’ dignity and improve the quality of life for your loved one. This includes things like hospital beds, special mattresses, oxygen, diapers, mouth swabs and many more things. This is all included in the price of hospice. Hospice is covered 100% by Medicare and Medicaid. Commercial insurances also provide hospice coverage but may require, a small co-pay. This is a wonderful benefit for extra care with little to no extra payments.
When your loved one passes, you call the hospice. Most hospices send a nurse and social worker and/or chaplain to your home. They take care of everything for you, including calling the physician to get pronouncement and calling the coroner to report the death. Most of the time when you are on hospice, the coroner will not have to come to your home. This means your loved one does not need an autopsy, and there is no need for police or other emergency services to respond to your home. The hospice staff then calls the mortuary that you choose (they can help you pick one ahead of time as well), and they stay with you as long as you need after the mortuary has left. Many hospices can help you with funeral services and all hospices are required to have a Bereavement Program. Bereavement services are at no extra fee, and are there for you and any family members who need help processing the loss of your loved one. Typical bereavement time is thirteen months after your loved one passes.
Signing up for hospice is a very easy process. You can call the hospice directly or you can have your physician make the referral. Your physician will have to write an order (much like a prescription for hospice). The hospice will come out and meet with your family and a nurse will evaluate your loved one to determine if they qualify under hospice criteria. If your loved one can no longer make their own decisions, then the Medical Durable Power of Attorney (MDPOA) will sign the consent form and the hospice care will begin.
I would like to share with you, my Dad’s story. He only spent three weeks under hospice care, but those three weeks made a positive difference in the quality of his life. My hope is that someday hospice will no longer be a scary word, but instead synonymous with comfort, dignity and better quality of life for those who feel isolated and scared of dying.
May 17, 2010, my father had his second surgery to remove a squamous cell carcinoma (skin cancer that was on his face). It spread into his ear canal and all the way into his brain. On this day we sat at the hospital receiving the horrible news. The doctor stated he thought he got all of the cancer, but when the tests came back they didn’t. The doctor looked at my mother and I and said “Your Dad is going to have to fight for his life, and he is going to have to fight hard,” Later that day, Dad told me “Jackie, I am not ready for a dirt nap.” He fought and fought. He started chemo and radiation. The first round of chemo was done and still the cancer was growing. He was not eating or drinking. Anytime he tried to eat or drink, it came back up; and the doctors did not know why. They could not help him from constantly throwing up. He was put on an IV feeding because he couldn’t do chemo without being strong. He had one more day left of his second round of chemo when he fell down at the doctor’s office while having a small seizure. They rushed him to the hospital where my mother and I witnessed a Grand Mal Seizure.
Ten days before my wedding, he was placed in the ICU. We had so many questions. Every day he would wake up and look into my eyes, and he asked why he was there. Every time I gave the same answer and he said, “what do you mean, when did I get cancer?” I was so worried he would never leave the hospital. Ten days later, he did leave the hospital and, with the help of a wheel chair, he walked me down the aisle. He said “Jackie, I am still not ready for a dirt nap.” A few months later a feeding tube was placed into his stomach. It had been about 5 months since he was able to eat any solid food; we were hoping that the tube would help him eat. We were feeling optimistic until the doctor said: “The tumor is back and I don’t know if we can do more chemo. We can do gamma knife radiation that should remove the entire tumor.” The radiologist said it was not a possibility. So my father, who was withering away, began chemo again. One day Dad was feeling horrible, acting different and couldn’t walk so I took him to the emergency room. They said there is nothing they could do and sent us home.
A little over a week later we returned to the hospital because Dad couldn’t walk, even with a walker. He didn’t know who he was, where he was and was incontinent of his bladder. This time they admitted him. His oncologist wanted to run another CT scan even though it had only been 3 weeks since his last one. We were feeling better because with a few bags of IV fluid he was “with it” again. I had decided to return to work. I called my Dad at the hospital to see how he was doing. I asked if they had given him any test results yet. He said “Yes, and it’s over”. I was confused, “Dad what’s over?” “My life” he responded, “I have 3 months or less, there is no more, nothing left.” I rushed out of work and straight to the hospital. We had a long conversation about what this meant and what the options where. I asked my Dad what was important to him in whatever time he had left. He told me he didn’t want to be in pain, he wanted to go home (NOT to a nursing home) and he wanted to live to the New Year. This seemed reasonable to me, so I called hospice On December 8, my 27th birthday, I signed my father onto hospice.
The hospice staff met us at the hospital. They talked to us about how they would keep him comfortable, how to get him home and what equipment he needed. My Dad had Medicare and private insurance, so we never paid a penny for his care. A hospital bed, over the bed table, bedside commode, suction machine and fall mats where delivered to my house. My Dad was able to come home and, by the time he arrived, all the medicine we needed also arrived. Within a few days my Dad’s pain was under control (this was a first in almost 7 months). He was also not throwing up, which felt like such a miracle. The hospice had access to all the medications they needed to treat all of his symptoms. Symptoms that he had been having for months that no one could fix. He only threw up about three times in his last three weeks of life. It was a wonderful change because for the past seven months he threw up at least six times a day.
As you know, even with symptoms being managed the hard part was yet to begin, at least for us that is. It was so hard for Dad to give up his independence. He tried to get out of bed to use the bathroom instead of the bedside commode, and he had a fall. I was able to call hospice at two in the morning after his fall, and they came out to make sure he didn’t hurt himself. Not only did they check on him, but they checked on me to make sure I was okay. I began sleeping in the same room, with one eye open. I was so scared, but Hospice was there for me every step of the way. One morning he was completely out of it and again incontinent. I thought maybe he would snap out of it. He didn’t. He remained incontinent of bowel and bladder for the remainder of his life. He hated being in diapers. I remember thinking back, to all the times he made me promise he would never be in a diaper. I was so worried that he was going to hate me forever for this. He was so agitated. Every time he went to the bathroom he got all worked up and tried to get out of bed, but he could barely move. I called the hospice; they came out right away and put in a catheter. My Dad was no longer talking, but he looked at me with his beautiful blue eyes and his eyes thanked me.
I love Christmas! Every year my Dad and I had our Christmas traditions. I was so worried that he wouldn’t make it to Christmas, but he did. Things were getting closer and closer to the end. The nurse came almost every day. One day we even got a nursing visit twice in one day, because we needed it. The CNA would come out and give him bed baths. She helped teach me how to cool him down with a bed bath when he was running a fever, to help keep him comfortable. The social worker came and sat with our family. She held me when I cried, and helped me get up when I couldn’t. She helped us pick a mortuary and make final arrangements. She explained what the signs and symptoms were surrounding death and dying so we would know. In Dad’s final days the nurse ordered some new medications and an oxygen machine. My Dad didn’t give up. He continued fighting. It was only 2 days until the New Year. His skin was already dying, and the nurse explained what terminal wounds were. A special mattress was ordered to keep his skin protected and to keep him comfortable.
They say death is a beautiful thing. I never understood that until December 30, 2010 around 6pm when I went to check on my father. Every time I went in to his room I would hold my breath until I saw his chest rise. This time I didn’t hold my breath. This time I knew. He was gone. The hospice came over (at record speed, in the snow storm none the less!) A nurse and chaplain arrived. They sat with my family and they called the mortuary to come pick Dad up, and take him for his final journey. I was no longer scared. I was relieved. My father, the man who fought harder than anyone I have ever met, died. He died at home where he wanted to die, he died in comfort, without any pain. He died a peaceful beautiful death. He could not have done it without the help of hospice. That day I was at peace. The days following? Well it depends on the day, but losing your father when he is 65 years old is not easy. Luckily the hospice will stay involved with me and my family for 13 months. They have a Bereavement Program here you can have individual calls, private sessions or group sessions. I can go on, because I am not alone. I have support right next to me.
I wanted to share my father’s story so that you can make an informed decision for a peaceful journey when the time comes. I want everyone to know that a terminal illness is not the end, but instead the beginning. Some people live for days, some months, some even years after a terminal prognosis. What matters the most is what you do with those hours, weeks and months. Hospice is there to help you, to help your family.
Here are some questions that may be helpful in picking the hospice that is right for you:
*Is the hospice a Medicare approved Hospice?
*What is the staff to patient ratio?
*What is their response time, for referrals and for urgent calls?
*How do they handle pain crisis? (Do they send out pain medication in anticipation of a pain crisis or do you wait for a pain crisis, and what is the response time when medications are ordered?)
*How do the afterhours and evening shifts work?
*What do they supply? (DME, Medical Supplies, Medications ect)
*Will my loved one have the same team consistently? What disciplines make up my loved ones team?
*How many visits will my loved one have per week?
*Who comes when my loved one dies?
*What kind of support do I get, after my loved one dies?
*Do you consider my whole family in developing my loved one’s care plan?
*Do you have an interdisciplinary or multidisciplinary team?
*If I don’t have a primary physician, will their Medical Director take over the care for my loved one?