As a hospice social worker, I had the tremendous privilege of sitting with families and preparing them, and their loved one, for the end of life. I worked with dedicated hospice nurses, chaplains, aides, and doctors. While every hospice has its differences, they all have the same mandate- to provide the are and comfort needed to ensure the patient will transition from this life in safety and as pain free as possible. To provide all the support necessary for the family to be prepared and educated. My assumption is that every hospice, every hospice staff member, holds that mandate as their own calling.
How I wish that were true. As I was reminded only this last week, some do not place the patient first. Some do not do the education. Some assume that everyday people are totally familiar with the end of life, comfortable with medications, and able to manage the intense emotions that can occur around the end of life.
So tonight, I am writing this blog to ensure anyone who need to know how end of life care should be, and to be empowered to ask for and expect that their loved one and the entire family will receive the care they should. I want you to know what you should receive, and what the end of life, in general, should be.
Hospice:
- Nurse visits as often as needed to keep symptoms under control. If you feel that they are not enough, use the number they give you to ask for more.
- Emergency visits: If something changes and you need to ask a question or a new symptom arises, or pain increases, or anything, your hospice should have an on call nurse available to at the very least assess by phone, get orders changed, send meds out, and come for visit if needed.
- Social workers: should be there to handle any issues related to coping, benefits, family issues. End of life frequently generate conflict that has long simmered in families- your social worker should help you with those.
- Chaplains: Should be there, in a non-denominational way, on a schedule that works for you. They are there to provide spiritual support, not to be your minister or priest or rabbi.
- Aides: They are the people who will do bathing, grooming, and in general the most gently care with the greatest discretion.
- Doctors: Every hospice patient has a doctor on the hospice team. The doctor should make a visit, and then return as needed. They work with your nurse to make decisions and orders. They are experts in pain management and symptom relief.
- Pharmacy: They should deliver, at all hours, so you are not going to the pharmacy.
- DME: The durable medical equipment company: They should deliver the hospital bed (yes, you want one), the PPE mattress pad to reduce pressure, the bedside commode with arms that can go over the toilet or bedside (place a chux under it if it is bedside), the wheelchair (it needs to be a transfer or travel chair, not the one with the big wheels. Those will hurt your back), and the oxygen. Be sure the oxygen is explained fully to you, that there is a key for you to open the emergency tanks in case of power loss or a trip out of the house, extra hose, extra nasal cannulas and a mask. Make sure they explain the oxygen concentrator and install the water reservoir for you to add water to reduce drying from the oxygen.
You can obtain a hospice referral by asking your doctor. If that does not occur, you can call a hospice and ask them for an evaluation, and they can call your doctor for the referral. Hospice is intended for the last six months of life. Getting that referral does not mean you are going to die next week. An earlier referral means less stress, and, ironically, longer life. Do not be reluctant – hospice brings support no other program does.
Your hospice should bring a folder with their information, and your team should add their names to it. You should always know how to reach them, day or night.
They will need to know what mortuary you have selected. It is best if you have those arrangements made, and the mortuary’s information available. If you have not done so, now would be the time. You don’t have to decide anything other than which company, but if you put it in writing with the mortuary, and the terminally ill person signs for their wishes, they cannot be changed, which gives the dying person some sense of control. The mortuary can provide you with all the options and allow you to look at ideas of which you might have been aware.
If the hospice referral is made in a timely manner, you and your loved one will have some time to spend together. That should provide an opportunity to say what needs to be said to one another, the rest of the family, friends, and to finish conflicts to completion. You can limit how much time is spent with activities or people if necessary, with your loved one’s energy level and symptoms. This is your time- use it wisely and carefully. I often suggest a circle for the close friends and family to share memories and thoughts with the dying person, in which they can hear how they will live on in those who are being left behind. It allows them to truly experience their legacies. I also suggest that videos be recorded, children’s recorded books be read, and photos taken so the family will have those to hold onto afterward. I especially suggest voicemails be left saying “I love you” or whatever the phrase should be for the survivors on their phones.
When your loved one begins to decline into the dying process and hospice is in place you should have been prepared, educated about what the dying process looks like, sounds like, and how symptoms can be managed. If symptoms get out of control, you should be able to have Continuous Care initiated on a 24-hour basis. Any hospice nurse should be able to call and make that happen if it is necessary. Every hospice is required to have that available. You should know what meds you have available, and they should be liquid for the dying process. If any of that has not happened, you need your case manager to visit and prepare you, or the nurse they assign. Every hospice staff person should be ready to help you understand what you are seeing.
During the dying process your loved one will gradually stop eating and drinking for the most part. They will be asleep more than awake. They will become weaker, and less ambulatory until they are essentially or totally bedbound. The lack of food and fluid is uncomfortable for those watching, but it is normal and not uncomfortable for the person dying. You should know what meds you have available, and they should be liquid for the dying process. Using artificial nutrition and hydration does not help- the body is shutting down and cannot process it. Your loved one will more than likely need oxygen support for comfort. Liquid opioids are also used to relax the muscles, which makes breathing easier.
It is frequently assumed that using morphine and other meds advances the dying process. I was once told when one of my spouses was dying, by a minister, that they had contributed to their mother’s death by allowing morphine to be used. I am not giving medical advice- you may certainly check this with your hospice nurse or doctor. Meds at end of life are for comfort, not to hasten death. In some cases, you can elect to have your loved one sedated heavily to make them more comfortable. That is also not to hasten death. It is to remove them for experiencing pain or difficulty breathing from disease process.
Your loved one will eventually begin Chaines-Stokes breathing, which means periods of apnea between breaths. It can look uncomfortable. It is not. It is simply the brain shutting down, and no longer giving the impulse to breathe. The limbs may grow hot, but then cool, and blood begins to pool following gravity as the circulation begins to slow. Your loved one can still hear you but may not be able to respond in any way. There may be noise from the throat caused by fluid collecting on the vocal cords but not being swallowed. Again, it is not uncomfortable, but it is for those sitting bedsides. Throughout this process your staff from hospice should be there providing support or should have educated you as to how to use medications to manage symptoms.
What should not happen is that you are caught off guard, unaware of what is going to happen, without support. Last week I witnessed a hospice telling a family member of a dying person that they had to “earn” liquid morphine by crushing morphine pills and feeding them to a dying loved one. Only then would they order liquid. I saw that family caught off guard, unprepared for the dying process. I found oxygen without a key, and a patient who did not understand that oxygen was for comfort and would help. No family should ever face that.
A dying person deserves comfort, and preparation. The family deserves time to prepare, to say goodbye, and to feel comfortable with sitting bedside because they are prepared. My goal is for this to help in ensuring that those facing a loss from a terminal illness will be knowledgeable about what is available, prepared for what is coming, and able to advocate for themselves. Part of my goals in my work is for all of us to be able to talk about dying, and to be prepared to face losses in our lives with the best possible support, and, for the survivors, to work through their grief with a greater understanding of the dying process. I hope this will be part of that.
You can find me at www.yourpaththroughgrief.com and https://jilljohnsonyoung.com/ .
