Life is busy, and it gets even more complicated when a lovedone is looking at hospice!Family of a lovedone
“Sorry I’m running a bit late,” Debbie exclaimed as she settled into a chair in Pastor William’s office. “Traffic today seems heavier than usual.”
“No problem,” Pastor William replied with a smile. “What’s the latest on your dad?”
“That’s what I need to talk with you about,” Debbie responded with a break in her voice. “You know about dad’s stroke. Well, now they’ve discovered he has stage 4 pancreatic cancer! We had no idea. And he’s only in his late fifties!” Debbie took out a handkerchief from her purse, wiped her eyes, then continued. “The last thing we’ve been thinking about was the possibility of… of death. Dad seemed to be in such good health before that stroke. He had the usual arthritis, occasional forgetfulness. But nothing serious. I think we’re likely way behind in planning for the end of his life. And I sure could use your help!”
Hospice is very needed, but they are a business and they do the business of hospice well. Here is what they will do well and then we will discuss the stuff you need to know before, during and end-of-life:
Hospice is a specialized type of care that focuses on providing support and comfort to individuals who are in the final stages of a terminal illness. The primary goal of hospice care is to enhance the quality of life for patients facing a life-limiting illness, rather than trying to cure the underlying condition.
Hospice care is typically provided by a team of healthcare professionals, including doctors, nurses, social workers, counselors, and trained volunteers. These professionals work together to address the physical, emotional, and spiritual needs of the patient and their family.
The services offered by hospice care can vary, but they often include:
- Pain and symptom management: Hospice teams prioritize pain relief and manage other distressing symptoms to ensure the patient is as comfortable as possible.
- Emotional and psychological support: Hospice professionals provide counseling and emotional support to patients and their families, helping them navigate the challenges and emotions that arise during end-of-life care.
- Assistance with daily activities: Hospice aides can assist with personal care tasks such as bathing, dressing, and grooming.
- Medications and medical equipment: Hospice care typically covers the cost of medications, medical supplies, and equipment needed to manage the patient’s symptoms.
- Bereavement support: Hospice teams often provide counseling and support to family members and loved ones both during the patient’s final days and in the grieving process afterward.
Hospice care is typically provided in the patient’s home, but it can also be offered in specialized hospice centers, hospitals, or nursing homes, depending on the individual’s needs and circumstances. The duration of hospice care can vary, with some patients receiving care for days or weeks, while others may receive it for several months.
It’s important to note that hospice care is intended for individuals with a limited life expectancy, typically diagnosed with a terminal illness and a prognosis of six months or less. The specific criteria for eligibility may vary based on the country or healthcare system in which the care is being provided.
“There’s a lot to cover on that subject,” William replied. “And there are a lot of issues I can help you with. Also, as you know, my wife Suzanne is a medical doctor, a gerontologist. She specializes in caring for the elderly, and I’ve learned a lot from her about some of the end-of-life medical issues. You may want to take some notes while were talking.”
“Great idea,” Debbie replied, removing an electronic device from her large purse. “I came prepared to do just that. So where do we start?”
“Given the urgency of your dad’s situation, the first thing we need to talk about is a durable power of attorney for healthcare. I understand that your dad was initially in a coma after he had the stroke, but that he is conscious now. If that’s the case, and if you don’t already have one, a durable power of attorney for healthcare would be the first thing you need to get done.”
Debbie had a puzzled look on her face. “I’m not sure I understand what a power of attorney is.”
“A durable power of attorney is a document, signed and notarized by your father, that permits you or someone else who is able and knowledgeable about your dad’s situation to make important decisions about medical care. I’m not a physician, but I know that, given your dad’s very serious medical situation, it’s likely he may not be able to make decisions about some pretty complex issues going forward. You see, it’s not easy to think about dying, for ourselves, or for our loved ones. But Hebrews 9:27 makes it clear that we are all appointed to die at some point. I know that your dad has trusted Christ as his Savior, which is the most important step in preparing for death. But now that his passing could be close, these are decisions about end-of-life care that you may have to make for him. For example, what level of treatment. Would you want CPR to be used, a feeding tube, what about a breathing machine? There are pros and cons to the use of the use of each.”
“I think I need some additional clarification on these things,” Debbie responded shaking her head. “It sounds confusing.”
Understanding healthcare decisions at the end of life
“In talking about end-of-life decisions, we usually begin with the medical,” Pastor William responded. “Unless the end-of-life happen suddenly, as in an automobile accident or a heart attack, there may likely be questions about what kind of medical treatment your loved one wants or doesn’t want, or how comfortable your loved one wants to be. Typically the document that assigns a person to make those decisions if your loved one is incapacitated is called an advance directive. Now advance directives cover other issues as well, particularly finances. It’s very important that you take care of this matter with your dad while he is still able to make the decision as to whom he would like to be his health care agent. Now there are other terms you may have heard used for this role, such as surrogate, proxy, representative or even healthcare power of attorney. But they all function the same way.
“Now, a do not resuscitate order, or DNR, means the person has chosen in advance not to be resuscitated, nor to be placed on a breathing machine. CPR is typically used when your heart or breathing stops. It typically consists of pushing on the chest repeatedly, blowing air into the lungs, and perhaps using an electric shock, or defibrillation, or a drug to restart the heart beating. According to my wife, CPR works best for a person who is in relatively good health, and when it is started right away. But it might not work as well for someone in a serious medical condition, and there can be injury caused by the use of force on the chest.
“Another issue related to this is the use of a ventilator. You’ve likely heard a lot about these because of the Coronavirus pandemic. This is a breathing machine that pushes air into your lungs to help you breathe better. But again, there are cases, and I have counseled with families, where a ventilator is simply used to try to prolong life even when there is no longer brain activity. So as you can see, these are not simple decisions to make.
“I see what you mean about that,” Debbie commented, shaking her head. “What about a feeding tube?”
“When the patient can’t eat or drink on his own, doctors may use a feeding tube to provide nutrients. Again, to quote my wife, a feeding tube can be a lifesaver by providing nutrients that allow the patient to get better, and to sustain some patients through a long-term illness.
“The problem is, a feeding tube doesn’t cure or heal any illness. And Suzanne says sometimes they cause more problems for the patient than not eating at all. I think different doctors may look at this differently.”
“Sounds like Alex and I have some serious communication to do with dad, and some significant preparation before we have that conversation,” Suzanne observed. “Can you help me put together a list of things to consider?”
End of life checklist
“I’d be glad to,” Pastor William replied. “We’ll start with the decision about a health care agent for your dad, and an advance directive. You probably want to contact your lawyer about the appropriate forms to use in our state, as each state has different regulations about this.
“You’ll also want to have a conversation with your dad, and include his physician, about the issues we brought up. Here are some terms for you to add to your list, to look up prior to your meeting. ‘Allow natural death’, DNAR, or do not attempt resuscitation, DNI, or do not intubate. NFR or not for resuscitation. In all of these issues it’s important to remember that the main thing is to respect your dad’s wishes. Sometimes adult children tend to feel pretty strongly about what’s best for dad or mom. I think I know you and Alex pretty well, and I’m sure you’ll make your dad’s concerns top priority.
“By the way while I’m thinking about it, I’m assuming your dad does have a will?”
For the first time during their meeting, Debbie smiled. “Yes, thankfully we took care of that about a year ago. At the time, dad’s attorney brought up the question of an advance directive. But we were sort of in a hurry and wound up putting that off.”
“I don’t think you have that luxury now,” Pastor William smiled. “But thankfully you still have the time to get that done. And it’s definitely at the top of your list.”
“Another item for your list is the question of organ donation. You mentioned that your dad is relatively young, and you may have already had this conversation with him. But it would be worth bringing up, because his organs, which he will obviously no longer need when he passes, could provide life and hope for more than one other individual.”
“We have discussed this with dad,” Debbie replied. “But we’ve never gotten around to doing anything about it. I guess, like you said, there’s no time like the present to have that additional discussion.”
“Another item I’d put on the list,” Pastor William continued, “is what would your plans be if your dad survives? I have a friend back in Alabama who was diagnosed with stage four pancreatic cancer. He lived almost 6 years after his diagnosis, and was teaching a Bible study up until a month before he passed. You’ll need to discuss with Alex, as well as with your dad, whether your plans will be for him to live in your home or be placed in a senior care facility. And if you decide on the latter, you’ll have some significant homework to do in preparation for making a good decision about that.
Putting affairs in order before death
“Let’s also add to your list something I call ‘putting your affairs in order.’ Years ago when I was pastoring in the Midwest, I went to visit a member of our church family who was scheduled to have gallbladder surgery the next day. He was sitting on the edge of his bed, and had papers spread out all over the bed beside him. I asked him, ‘Joe, what in the world are you doing?’ To which he replied, ‘Pastor, I’m setting my house in order. I read in Second Kings 20:1 where the prophet Isaiah told King Hezekiah to set his house in order, because he was likely to die.
“’But Joe,’ I replied. ‘The surgery you’re having is fairly routine.’ The next day when the surgeon came out of the OR, it turned out Joe had died on the operating table. Since then I’ve always recommended having your affairs in order.”
“So what do I need to include on that part of my list?” Debbie asked as she typed on her device.
“I would make sure you know where any of his important papers are, including life insurance policies, a copy of the will, and his banking information. And wen you talk with the lawyer, make sure you have a financial power of attorney drawn up, so that you or someone will be able to pay his bills and take care of any other financial issues if he isn’t able to.
“Back on the medical side, one of the questions you’ll need to discuss with your dad is how would he like to be treated as his time approaches. Would he prefer if possible to be at home? And what about hospice care?”
“Yes, before Alex’s mother passed away, she was on hospice care. What can you tell me about what we need to do in terms of talking to dad about this?”
“This comes under the issue of how comfortable your dad wants to be as he nears the end of life. My understanding is, the last stages of pancreatic cancer can be extremely painful. Hospice or palliative care basically addresses the comfort of the patient, the type and dosage of pain medication used, and other issues related to patient comfort, including personal grooming and bathing. Hospice care can take place in the hospital or at home. But shifting to hospice care represents a transition from trying to help the patient get well to recognizing that the patient’s time is near and making sure the remaining time is comfortable.
“I will tell you this. Ultimately, our time of death is in God’s hands, no matter what we are able to do medically. My mother had suffered a major stroke, and we flew in to see her. I also had a speaking engagement back in my hometown than weekend. My brother called a couple of days before we left and said, ‘You’d better have mom’s funeral message prepared. You know she’s on hospice, and they’re giving her just a few days to live.’”
“That must’ve been really difficult,” Debbie commented. “Did she pass while you were there?”
“No, she didn’t. When we went to see her, the doctor told us they were prepared to disconnect her from the ventilator, and that she would pass away within the hour. We prayed with her and dad–and my siblings–then we waited. An hour after they disconnected the breathing machine, my mother was singing hymns! It was the most amazing thing! She wound up living six weeks after they said she had hours to live!
“I share that with you, Suzanne, because I want you and your family not only to be prepared for the end of your dad’s life, but also for the possibility that God will see fit to prolong his life. My wife, as a physician, has a strong conviction that she is to provide the very best medical care, but that ultimately her patients, many of whom are nearing the end of life, are ultimately in the hands of God. I believe Psalm 139:16 teaches that God Himself knows and orders the number of days in each of our lives. I would encourage you and Alex to read that passage with your dad and ask God to guide your planning, so that whether it’s your dad’s time now, or later, the Lord will provide you all with wisdom and direction for each decision.”
“I sure thank you Pastor,” Suzanne concluded. “I think I’m a lot more prepared to walk through this possible end-of-life time with dad now.”
Don Hawkins, D. Min. is the President and CEO of Encouragement Communications and the Chief Content Officer of the Master Life Coach Training Institute. He manages The Worship Channel internet radio station and hosts Encouragement Today and Encouragement Live radio. Don has authored or co-authored over twenty books including Master Discipleship Today, Never Give Up, Parent Care, Prime of your Life, Friends in Deed and The Roots of Inner Peace.
Hospice Family Watch List
It is YOUR RESPONSIBILITY to watchdog the hospice:
Signs of hospice neglect or malpractice can vary, but here are some potential indicators to be aware of:
- Unmanaged or poorly managed pain: One of the primary goals of hospice care is effective pain management. If the patient consistently experiences uncontrolled pain or if their pain medication regimen is not adequately adjusted, it could be a sign of neglect.
- Frequent infections or bedsores: Neglecting basic hygiene or failing to reposition bedridden patients can lead to frequent infections or the development of painful bedsores. If these issues are not promptly addressed or if they become recurrent, it may indicate inadequate care.
- Unexplained weight loss or dehydration: Hospice providers are responsible for ensuring that patients receive proper nutrition and hydration. Unexplained weight loss or signs of dehydration could indicate neglect in providing adequate food and fluids.
- Lack of communication or unresponsive staff: Effective communication between the hospice team, the patient, and the family is crucial. If there is a consistent lack of communication or if staff members are unresponsive to inquiries or concerns, it may suggest neglect or inadequate care.
- Medication errors: Errors in administering medications can have serious consequences for hospice patients. If there are repeated instances of medication errors or if the patient experiences adverse effects due to improper administration, it could indicate malpractice or negligence.
- Delayed or inappropriate interventions: Hospice providers should respond promptly to changes in the patient’s condition and adjust the care plan accordingly. Delays in providing necessary interventions or inappropriate treatment plans may suggest a lack of attention or neglect.
- Emotional distress or psychological neglect: Hospice care should address the emotional and psychological needs of patients and their families. If there is a consistent lack of emotional support, neglect of counseling services, or failure to address psychological distress, it could be an indicator of neglect.
If you suspect hospice neglect or malpractice, it is important to document your concerns, gather relevant information, and communicate your observations to the appropriate authorities, such as the hospice administration, regulatory agencies, or legal professionals specializing in medical malpractice. They can guide you through the process of addressing your concerns and taking appropriate action.