Choosing to pursue hospice care with a loved one is a very personal and stressful decision to make. Many questions arise throughout the entire process, and some of those questions are difficult to verbalize. As a former hospice volunteer and now CEO of SilverStone Hospice, I want to share some of the questions we find ourselves answering most often – from friends and families just like you.
Hospice care involves not only caring for the physical and medical needs of a patient, but also emotional and spiritual issues as well. By the time you’re done reading the following pages, you will know more about hospice than most people in your situation.
Also, know that hospice companies are like fingerprints; no two of them are alike. When choosing a hospice, look for people with a genuine passion for end-of-life care; this work takes a special kind of people and a special kind of care. I truly hope this article makes your decision-making a bit smoother.
1. If we pursue hospice, does all treatment stop? Will my loved one still get treatment for (wound, infection, etc.)?
Hospice is the decision to stop pursuing curative treatment for a life-limiting illness, such as cancer, renal failure, or heart disease. Medications, dressing changes, oxygen, and some other treatments won’t stop unless you prefer them to. For specific situations, please reach out to your hospice team. Each situation is different, and a good hospice creates an individualized treatment plan for each patient.
2. Does he/she still need to take their regular medications, like for heart, or blood pressure?
Most of the time – yes. If taking medications is difficult, or they have undesirable side effects, then it may be best to discontinue. However, this will be a decision the patient and hospice team make together.
3. What if my family and I change our mind after choosing hospice?
You are allowed to change your mind anytime. Once on Hospice, if things change and you decide to pursue medical management that is outside the scope of Hospice care, you can do that. If you wish to join Hospice care once again, you will need to take the steps to re-qualify under your Medicare/Medicaid plan.
4. Can my loved one be on hospice and keep the same doctor / PCP?
Yes, you can keep the same doctor if you’d like. You can also use the medical director at the hospice company at no extra cost, it is all included. As an example, at SilverStone, we have a Medical Director who runs a large family practice, and he and his resources are available to our patients.
5. Our doctor still suggests another treatment, but my loved one wants to stop. How do we discuss this with the doctor?
Some doctors are more comfortable with hospice than others. If your physician is not as comfortable, write down your questions for him/her prior to the conversation. Discuss treatment goals and likely prognosis. But more important, let your doctor know your feelings on the matter. Ultimately, physicians are committed to doing what is best for their patients – communication is the key. If you don’t want to continue treatment, and you want to focus on quality of life instead, that is your decision alone to make. You have control over your situation, no one else does.
Generally, the family has conflicting ideas on what to do, often the patient is ready, the doctor agrees with the patient, some members of the family refuse to accept the disease progression. A good hospice will have a strong social worker, chaplain, team of volunteers, and a nursing team that will guide you, your family, and support you in communicating with your doctor.
6. How long can my loved one be on hospice?
Your loved one can be on hospice as long as they are eligible. Generally, the reason why someone is no longer eligible is because their condition has improved. Please, do not worry about time frames – we all understand that everything happens at its intended pace.
7. How long will my loved one live?
The decision to be on hospice means letting nature take its course in the dying process. This is very unpredictable – and very individual. A doctor can give you a ballpark idea based on his/her experience. However, this should be taken as a guideline only to manage your expectations. Because of this unpredictability, hospice benefits can be recertified after, so do not worry about “using up” benefits. It will be ok.
I’ll add this: No one can truly tell you how long someone will live, only God knows that answer.
8. What if my loved one gets better instead of worse?
This can happen – and when hospice is no longer appropriate it is allowable to discontinue, and then return to hospice later if the need arises again. It is also important to know that some patients “rally” towards the end of life or have a period where they feel much better. This may last a short time, or even many days – to be followed by a return to frailty. The best advice we can give is to enjoy each day at whatever level of functioning it brings, as nature takes its course.
9. I can’t be there all the time – I must work. How can I manage it?
Social workers employed by your hospice company of choice can collaborate together to help you navigate competing needs. We understand that not everyone has the ability to commit to full-time caregiving. Volunteers supplement certain needs in the home by way of caregiver respite for short periods of time. Area facilities can provide 24-hour care, with enhanced care by the hospice company. There are also options for 24-hour in-home care by hiring an independent caregiver. In most situations, employers do give up to 12 weeks of time to care for a loved one through the Family Medical Leave Act (FMLA), which might be something you can explore.
10. What can I do to help make them comfortable?
We understand that being a caregiver is hard – and some people have not experienced it before; at SilverStone we are called to care and we are here to support you. One thing you can do is think about the habits the person has, or the things they liked. A special pillow? A certain side that they always rested on? Did they always like a fan going? A certain type of music? Those types of things we as medical workers do not know – only you do. We can show you how to best do physical care, but you provide that extra insight into making the environment comforting. You are a valuable part of the caregiving team.
11. I am not religious; will the chaplain still try to talk to me or push beliefs on me?
At a good hospice, chaplains are here to follow both the patient and families’ lead, as far as spiritual needs go. If you prefer your own clergy person or spiritual support, that is perfectly fine as well. We find that many patients and families find chaplain services comforting and valuable, and we do not focus on a particular denomination. We are here to support, whatever that looks like.
12. We practice some alternative medicines (herbal, etc.) will we be allowed to continue this?
Your physician will need to know which herbal medicines or supplements are being taken, so that interactions can be checked between any pharmaceuticals – however that does not mean there are restrictions. The doctor just needs all treatment information. Holistic medicine is important, and we are here to support patient wishes.
13. Will the pain medications like morphine cause my loved one to die early?
Of course not. Before I answer this question in detail I’ll share that some of my friends who don’t’ understand what I do for a living (I’m used to this, most people don’t’ understand what a gift hospice is) and I’ve been asked if all hospice does is put patients on morphine and have them sleep all day.
Read my lips: This is categorically not true. Narcotic pain medications are often used to treat higher levels of pain for hospice patients. The side effects of these medications can slow breathing, which is part of the way the medication works to block pain signals. Your hospice nurses and physician can manage medicine doses effectively to control pain according to the patient’s weight and tolerance. They often use a combination approach of more than one medicine. Feel free to ask questions and address concerns. The goal is to maintain a good balance of pain control while minimizing side effects.
14. Will he/she become addicted to the pain medication? It seems like a lot.
After using pain medications for a while, patients tend to build up a tolerance for the medication. This means that it takes more medicine to reach the same therapeutic effect – which is pain relief. Tolerance is not the same as addiction. In hospice care situations, addiction is not usually a concern.
15. I have young children – is it harmful for them to be in the house with a dying person?
Each parent knows their child’s experiences, level of maturity, and emotions. Hospice Social workers can discuss the situation with you and recommend tools to communicate with your children about the dying process. We can also recommend family therapists to help guide the family through this difficult time. We suggest discussing the situation honestly, but at an age-appropriate level, and allowing children to feel free to ask any questions that come up.
16. Will hospice keep my loved one safe in the midst of the Covid-19 Pandemic?
On this, I can’t speak for others, but I can tell you what we do at SilverStone: To both prevent and manage COVID-19 related risks and symptoms, each member of the team has full PPE (Personal Protective Equipment) including masks, gloves, gowns, and goggles.
Also, a COVID-19 Care Kit is provided for the patient and the family. If you are not at home but at a facility, our care team is prepared with N95 masks, gowns, gloves, and additional PPE for the facility care team and staff of our patients.
Every single member (including myself) of SilverStone Hospice staff is tested every 14 days for Covid -19. Last but not least, during the COVID-19 crisis and wide-spread shut down of Skilled Nursing Facilities, our No One Dies Alone volunteer team provided care for patients within a facility by passing the baton of compassionate care and sitting at the bedside of our patients when the family is unable to be present.
17. My loved one has dementia and is confused. He/she talks to people and sees things that aren’t there. How should I respond?
This is a common occurrence, but it can be very unsettling. Sometimes pain medications can induce confusion, and sometimes it is part of the disease process. If your loved one does not reorient easily or seems upset if you try to question their reality – it might be best just to go with it. Sometimes people live in the past, and this can be a good time to just let them talk. You might hear some childhood memories you had never heard before. You can also connect in other ways – through favorite childhood music, hymns, prayers, or even just by holding their hand and being present.
18. I am completely exhausted and overwhelmed with this. How do I cope?
Caregiving can be exhausting and emotionally draining. At SilverStone, we offer respite care benefits. During respite care, your loved one can be cared for by nursing staff to allow you a break, or time to complete necessary travel. Ask your hospice company of choice about respite care and how the arrangements can be made.
19. What are some of the signs that death is near?
The time of death for a patient is impossible to predict, but your nurses and team can make you aware of some of the physical signs. Typically, respirations and circulation gradually slow, and patients respond less and sleep more. As this stage begins, your hospice team can let you know of their observations and answer your questions.
20. Should I talk about death or the dying process around him/her? Or keep the conversation positive?
Talking about death doesn’t make it happen, or happen sooner. Having said this, You know your loved one’s personality the best – but in most cases, it is fine to talk about it. It is not a surprise. It may offer some comfort and closure to make plans, ease their mind about settling certain affairs, or listen to their feelings. Emotional conversations are part of the hospice journey and can be very healing for both the patient and family.
21. If care gets too hard, can we go to the hospital? Will the emergency room see us?
Yes, you may – but your hospice team wants to help before it gets to that point. If pain management needs adjusting, if you need respite, or symptoms are not under control – we want to be there. Your hospice team is available 24/7 to help guide this decision and help keep your loved one comfortable and at home. During the current COVID-19 Pandemic, I advise families to keep their loved one who is on hospice at home or at the nursing or assisting living facility of their choice and avoid hospital visits. Make the doctor and the nurses “come to you” instead, and that is exactly what hospice does.
22. My loved one has a living will, how do we make sure that it is followed?
Please make sure that SilverStone has the most recent notarized copy of the living will so that it can be incorporated into the treatment plan. We always want to honor patient’s wishes and the plans they made in advance for their care.
23. Who handles his/her finances during this time when he/she is unable?
Hopefully, the patient has made legal arrangements for power of attorney prior to this time, but if not, a good hospice company should have experienced people to guide you in the process to be able to manage financial affairs.
24. How do I keep from crying around him/her? I am so upset I just can’t hide my emotions.
I come from a South American family, one where we spilled our feelings out to whomever would listen. My ex-wife’s father was English and in her family, people didn’t share feelings too much. Every family is different. Having said that, when dealing with a terminal illness it always helps to talk to others about your feelings. Grieving is a challenging process, and more often than not begins prior to death. The patient may be grieving as well, and you can share your emotions freely while you cope together. You can always ask your hospice team for support.
25. My loved one hasn’t been eating – will they starve to death?
People who are approaching end of life often lose physical hunger signals and appetite. This is a natural process and does not mean that they feel hungry or deprived. Offer fluids and nutrition, or favorite foods – but do not feel bad if your loved one just doesn’t take much. Let the patient lead the way by eating and drinking when he/she feels like it.
26. How do I know if my loved one is in pain? He/she can’t tell me.
Pain is very subjective, and nurses are taught to look for physical cues that indicate probable pain. Good hospice nurses can guide you through those cues and discuss the best strategy. If SilverStone is your chosen hospice, our staff is available 24/7 to help answer specific questions, make a visit, talk you through any situation, and work together to make sure your loved one is comfortable.
27. My loved one isn’t responding much – can he/she hear me? Do they know we are here?
The short answer is – maybe. The longer answer is – very likely yes. Many stories are out there about patients who were unconscious and heard people speaking to them. Healthcare workers have witnessed this happening. In all cases, we support talking to your loved one. The sound of your voice and the touch of your hand is no doubt soothing, and an important connection for both of you.
28. I have never seen someone die – and I am nervous about the process. Will someone be here with us?
Yes. We understand that this is a difficult process, and everyone has different life experiences leading up to this. We are here to support where needed. At SilverStone, we are proud of our “No One Dies Alone” program, which ensures a hospice team member is present for support during the dying process. We provide emotional support and education when needed about what to expect.
At SilverStone, volunteers are at the core of our DNA and are specially trained to wait with our patients as their time of transition draws close. Also, we support our patients as they are in their final 24-48 hours, especially if they live alone and are without family or friends. We sit bedside and hold the hand of our patients, we read poems to them, we listen to their favorite music. We offer compassionate and vigilant support to each patient.
29. What happens when you call a hospice company for information?
I can tell you what will happen in our case: Within 15 minutes to one hour, one of our care consultants will visit to assess those needs and determine eligibility and benefits, and if all positive, one of our nurses will come to the home or facility and admit the patient. Soon thereafter all the needed medical equipment, supplies, and medications, including wheelchairs and beds if you need them, will arrive to the home. You have nothing to worry about.