PODCAST 8 – HOSPICE CARE
This podcast is available for listening at Ancient Faith Radio
Glory to Jesus Christ, Glory forever.
This is Deacon Mark for A Christian Ending.
Well so far we’ve talked about assessing your own motives and abilities to provide long term care. This is an essential first step if you find yourself considering caring, especially for an elderly patient and even more especially for a parent. I hope that you had an ideal relationship with your parents. Both of us being the children of alcoholics, neither Elizabeth nor I would ever claim to have had an ideal relationship with our parents.
We’ve also talked about nursing homes and the importance of Respite Care, for the patient and for you.
We’ve touched on the legal documents and the very vital aspect of finances on any caregiving decision.
Eventually, whether you provide care in your home or in a facility, the time may well come when you need to consider hospice care. When that time comes, please don’t freak out. Like everything else on the caregiver journey, we need to approach this decision as rationally and unemotionally as possible.
It is very important to understand that when you make a decision to place your loved one in hospice you are NOT issuing a death sentence. The standards for acceptance into hospice care can be fuzzy and flexible, but the main thrust is that the patient is not expected to live more than six months.
However, my mother is a very good example. She was in and out of hospice care several times and so was Frank. Hospice care qualifies your loved one for additional services under Medicare. Who knows what will happen under this new HealthCare law but as it stands now, there are numerous benefits your loved one, and you, will qualify for; such as additional nursing care, a home health aid, social worker and respite care. However, it is important to hear this, if their condition improves they can leave hospice care and resume normal care.
If their condition then deteriorates again, they can once again be certified for hospice care. They can also be recertified while in hospice care for another period of time. Both my mom and Frank were certified for hospice care, then rallied and returned to normal care and then returned to hospice care. There was little noticeable change in our house. They stayed with us just as before. But the additional assistance and support offered by hospice certainly did help.
So please remember that certifying your loved one for hospice is NOT tantamount to pulling the plug or issuing a death sentence.
In its earliest days, the concept of hospice was rooted in the centuries-old idea of offering a place of shelter and rest, or “hospitality” to weary and sick travelers on a long journey. In 1967, Dame Cicely Saunders at St. Christopher’s Hospice in London first used the term “hospice” to describe specialized care for dying patients. Today, hospice care provides humane and compassionate care for people in the last phases of incurable disease so that they may live as fully and comfortably as possible.
Hospice is a philosophy of care. The hospice philosophy or viewpoint accepts death as the final stage of life. As we have discussed earlier, Orthodox Christians know that death is not a natural part of God’s plan, but we still accept that all human beings must die. Too, we understand that physical death is not true death, but it is the threshold of true life, life in the presence of the living God who loves each of us beyond measure.
The goal of hospice is to help patients live their last days as alert and pain-free as possible. As Christians, alertness is important. We want to alert enough to pray, make our confession and receive communion. But we don’t want the patient to be in unnecessary pain either. Remember our discussion about the redemptive potential of suffering. There is a difficult balance here that may require much prayer and discernment. We hope that the patient is aware enough to participate in these decisions.
Hospice care tries to manage symptoms so that a person’s last days may be spent with dignity and quality, surrounded by their loved ones. Hospice affirms life and neither hastens nor postpones death. Hospice care treats the person rather than the disease; it focuses on quality rather than length of life. Hospice care is family-centered — it includes the patient and the family in making decisions.
Making the decision to place a loved one in hospice care can be very traumatic for some people. They will need lots of care and support themselves in taking this decision. But if our caregiving journey has proceeded with much prayer and the support of our church family, then, by now we have learned to place our loved ones in God’s hands. Indeed, as caregivers, we are his hands. Once we accept this ministry, we accept that He has given them to us, and, like everything else in our lives, we offer them back to Him and His great mercy. We have no power to lengthen their lives by one day, or even one moment. Our ministry, as we mentioned before, is to keep them safe, keep them comfortable, and let our Lord Jesus Christ take care of everything else.
It turns out, that as in everything else, there is a wide range of quality in hospice. Do your homework just as you did in looking for a nursing home. Get details, in writing, of what services they will provide and the schedule of those services. If you are not satisfied or they fail to deliver on their written promises, don’t be afraid to fire them. Things have changed since the early days when hospice was all volunteer. Today they are For Profit and you must treat them as you would any other business.
Depending on the patient’s circumstances and stage of care, hospice may provide any combination of the following services either at the home or, if you choose, in a residential hospice facility:
Nursing Care. Registered nurses monitor symptoms and medication, and help educate both you about what’s happening. The nurse is also the link between you, and the physician.
Social Services. A social worker counsels and advises you, and acts as your community advocate, making sure you have access to all the resources you need and the maximum benefits available.
Physician Services. Your doctor approves the plan of care and works with the hospice team. In a full hospice program, a hospice medical director is available to the attending physician, patient, and hospice care team as a consultant and resource. (Please understand that this will not be your family doctor, it will be a doctor employed by hospice).
Spiritual Support and Counseling. Clergy and other spiritual counselors are available to visit you and provide spiritual support at home. Hospice care literature tells us that, “Spiritual care is a personal process, and may include helping you explore what death means to you, resolving “unfinished business,” saying goodbye to loved ones, and performing a specific religious ceremony or ritual.”
As Orthodox Christians, it seems that’s our priest’s area of expertise. Father John was a regular and very welcome visitor at our home. Both mom and Frank perked up and were always happy to see him. He brought communion regularly. Our nurses loved him, and learned a lot from him. Still, we were happy to have the hospice chaplain at the house. But really, who needs a chaplain when you have an active, dedicated Visitation Ministry. It certainly would be no inconvenience to have our church family stop by on a regular basis to read and pray with our loved one. We might also have some time for some intelligent adult conversation.
Caregiving at the end of life can be a lot like a new mother with little children. One can feel like a shut in, starved for a little adult conversation or an opportunity to get out of the house for a few minutes.
Like many Orthodox homes, we have a family altar and icon corner. It so happens that the best place for the family altar in our present house is in the front room, formerly the formal living room, now the library. When you enter our house the first thing you see is icons. The icon of the Prodigal Son hangs just inside the front door with the Theotokos. The second thing you see through the double doors into the library is the icon corner. You can imagine a protestant hospice chaplain stepping into a home like this for the first time. You may have seen the same reaction among your friends who come to your house for the first time. There is sort of a combination of amazement and wonder, a sense of joy, but not really knowing what to do next.
As a youngster I remember being told that there should be an icon in every room of an Orthodox home. Since I credit icons partly for my return to the church I, or more correctly we, have a particular fondness for them. It’s like being surrounded by your best friends at all times. So over the years, through gifts and inheritance, our home has become simply filled with icons. There is certainly more than one in every room.
The chaplains, after seeing all this, would carefully ask what they could, or would be allowed to do for us in a place like this. Elizabeth explained that they were quite welcome here and that it would be very nice for them to sit with the parents, read the bible to them and pray with them. They told us that they really came to enjoy coming to our home for their visits.
Home Health Aides. Also come in to provide personal care such as bathing, shaving, and nail care.
Trained Volunteer Support. Caring volunteers have long been the backbone of hospice. They’re available to listen, offer you and your family compassionate support, and assist with everyday tasks such as shopping, babysitting, and carpooling.
Physical, Occupational, and Speech Therapies. These hospice specialists can help you develop new ways for terminal patients to perform tasks that may have become difficult due to illness, such as walking, dressing, or feeding themselves.
Respite Care. A brief in-patient stay in a hospice facility can provide a much needed “breather” for caregivers.
Inpatient Care. By the same token, there may be times when your patient will need to be admitted to a hospital, extended-care facility, or a hospice inpatient facility. Sometimes medical intervention will be recommended to ease the dying process requiring round-the-clock nursing care. This would be more common for a terminal disease patient than for the elderly. Thus, a facility may be a better choice. The hospice team will arrange for inpatient care, and remain involved in the treatment and with your family.
Residential hospice can be a very valuable alternative to in-home hospice care as well. We have a residential hospice facility near us. One of our parishioners died there several years ago. It is a beautiful facility with the same dedicated, caring people on staff that we have come to expect from hospice care.
Hospice can also provide Bereavement Support. Bereavement is the time of mourning we all experience following a loss. Hospice literature tells us that “The hospice care team will work with surviving family members to help them through the grieving process. Support may include a trained volunteer or counselor visiting your family at specific periods during the first year, as well as phone calls, letters, and support groups. The hospice will refer survivors to medical or other professional care if necessary.” We include this here simply as an example of what we think the parish family should be doing. Visiting the family during the first year, as well as phone calls, letters, and support groups and keeping an eye out for any potential need for medical or other professional care if necessary; that sounds to me like the definition of a Visitation Ministry. The church is, or certainly “should be” the support group beyond all support groups.
I know that the idea of evangelization is probably the last thing on your mind. We certainly weren’t thinking about it. But over the years we had dozens of people in our home who had never heard of the Orthodox Church. Just seeing the icons and the level of care we were providing was enough to prompt questions about all kinds of things. By the time hospice got involved there were already quite a few people were familiar with the Orthodox Christian faith for the first time. Many of them came to the funerals and some came to other church services. The nurses and hospice workers were very impressed by our understanding of death and the dying process. They were even more impressed, perhaps bewildered and astonished that we planned to bury our parents without the assistance of a funeral director.
Long before the book was published, each of our nurses and each of the hospice organizations received a copy of A Christian Ending in draft, photocopy format. Each of them told us they had no idea that it was even possible to bury someone yourself. One social worker told us, “This is the kind of thing I thought I would be doing when I got my degree.” “The reality is quite different” she said.
It’s very hard for physicians to determine how long anyone with a terminal disease has to live. This is especially hard for patients who have advanced dementia, and especially difficult if these patients have no other life threatening illness, just old age. Medicare regulations require a physician to certify that a patient entering hospice is likely to die of their disease within 6 months. With dementia it is very hard to determine when someone is ready for hospice. This is why dementia patients are so under enrolled in hospice where they can benefit from better pain control and fewer hospitalizations.
Only 11% of the people who die in hospice had a primary diagnosis of dementia. By comparison, more than 40 percent of Americans who die each year are in hospice care. Remember too that Hospice patients who outlive the six month period can be recertified. It is not unheard of to receive hospice services for a year or longer. Also remember that they can come out of hospice care, be recertified later and reenter hospice care.
Along with this discussion of hospice, we must touch on the subject of Palliative care. Palliative care is treatment designed to relieve or reduce the intensity of uncomfortable symptoms without trying to cure the underlying disease.
Palliative treatment may involve the use of medicines and possibly surgery to control symptoms such as pain, nausea, and shortness of breath. The primary care doctor will help guide the patient through the critical transition to hospice care by providing best estimates for the chance of recovery, identifying situations where palliative care may be best, and at times, giving permission for the patient or loved ones to agree to forgo treatment.
Alzheimer’s disease is not considered a Chronic life-threatening disease such as cancer so there is very little palliative care provided. You need to know your rights and fight for your parents (or your patient).
Palliative care is simply care that relieves pain and suffering. It includes medication and hydration.
Palliative care is vitally important for all hospice patients.
There is a big difference in hospice so shop around and look for references. We learned we were fortunate, we’d say “blessed” to work with two good hospice companies. We had positive experiences. Since then we have heard a number of horror stories from other care givers of different levels of care. We can’t say if this is because of the hospice or because of lower insurance benefits. But if you are faced with a potential hospice situation, as always, do your homework.
Here we are, running a little long again but still, this is a good place to remind you. Please get your paper work in order. Even if you are the healthiest person alive. We know we are not guaranteed another heartbeat. Write your will. Fill out your own Health Care Power of Attorney and Living Will. Go ahead and fill out the Death Care Power of Attorney and Funeral Instructions as you’ll find in the appendix of A Christian Ending. In some ways it’s best to go ahead and take care of this stuff while you are still healthy and untroubled.
Don’t start thinking that somehow you’ll Jinx yourself if you fill them out. Mine have been in the vault for years. Besides there is no such thing as a jinx. We’re Orthodox Christians. We don’t believe in luck or superstition. We believe in providence. We believe in the mercy of the Lover of Mankind, Jesus Christ, our Lord. So think of your family and go ahead and get it done.
Next time we’ll talk a bit more about palliative care and what to expect as a person approaches the end of life.
Please send your questions and comments to us at A Christian Ending.com,
This is Deacon Mark.
May God grant you many, many years.