Dying at Home: Practical Care Palliative to Hospice to Palliative Care

By Tom Smith, Ph.D.

 

“Home, home, I am going home at last”

A couple of years ago my paraplegic mother was taken to the hospital and I got a frantic phone call from my brother, with whom she lives, saying to come quickly because she was dying. She was unconscious for 10 days and we were about to remove the IVs and the feeding tube. After MRIs and repeated efforts diagnose what had happened to her and bring her back, the doctors called us together and said that they did not know what to do and had given up hope. It was time to let her go. But, Ma threw us a curve ball and woke up asking what had happened. Nobody really had an answer to that question. The nurses excitedly called the neurologist. He appeared, held up his hand and asked her how many fingers he was holding up and how much is five times five. She answered both questions correctly.

The doctors still told us that she would not last long and to begin hospice at home. So, that is what we did … she is still here, but bedridden in the front room and no longer receiving hospice care. She spends most of her day looking out the window at the passersby and traffic while she is watched over by her gentle, kind caregiver until my brother and sister-in-law get home from work when they take over the caregiving duties.

Ma is very adamant about not returning to the hospital and she intends to die right in front of that window.

All four of her children have learned much about the dying process, palliative care, hospice care, advanced directives (we all have one now) and how to make Ma comfortable not only physically, but also emotionally and spiritually as well. We like to say that Ma put us through a “dress rehearsal” and we have now become comfortable and “friendly” with dying.

Dying at home is now much more common than it was 15 or 20 years ago. It used to be that one either died suddenly … the heart attack or stroke … or survived the crisis, went to the hospital and they did everything possible to keep one alive. I remember Dad went to the hospital 5 times before the last time in the Intensive Care Unit, hooked up to the tubes and monitors, where he died. Most people died in the hospital. Death was “medicalized” so to speak. It was like it was an unnatural thing.

Now, either because of choice or limited options, the dying person leaves the hospital, goes home and receives hospice care. Hospice is not so much of a place, but a philosophy and process. Much can be done to make sure that one’s final months, weeks or days are spent in the security, comfort of home and with dignified care that recognizes the individual and their unique needs. There is no more the cold, sterile anonymity of the hospital.

At home, family, friends and partners can take charge to provide whatever it takes to make the loved one feel safe and comfortable. Both the dying person and the caregivers also have a sense of control over the situation that they would not have under other circumstances. This sense of control can be very comforting. Moreover, family understands the idiosyncrasies of the dying member and can make sure their favorite foods are available, that pictures of loved ones are around, that their favorite television station is on or that the dying person can see “Gone With the Wind” just one more time. It is the family’s opportunity to offer one “final gift” of love and caring.

No matter what the setting, house, living room, bedroom, apartment, ground floor or upstairs, it can be made into a HOME. This is, however, a special home with extraordinary and sometimes sophisticated equipment: Beds that can be adjusted (Ma has one with an air mattress to prevent bedsores), trays that fit over the bed, lifts (the most common called a Hoyer lift) that enable even a small person to help the bedridden out of bed and onto a wheelchair, another accoutrement of the sick room. There may be medical devices that monitor the person’s vitals and nowadays, there may be a setup that permits the doctors and nurses to “telemonitor” the individual using computers and wireless communicators. Finally, something as simple as throwing a blanket or rug over a commode so not to be reminded of all the medical stuff can make their space more of a home.

Before Ma’s “dress rehearsal”, she spent most of her time in the back bedroom that was her domain. She was quite independent and happy with the situation. After coming home from the hospital, the first decision to be made was where to set up her room where she could be watched 24 hours a day. So, the living room became just that: THE LIVING ROOM. My brother and his family shifted to the family room and Ma finally had a “room with a view”, with a TV and computer and near her beloved doll collection. This was both a practical and emotional choice. She can be easily monitored (she can be seen and heard from almost anywhere in the house) and she is around the things she loves and has the vicarious interaction with the world outside the big picture window.

In her setup, caregivers, relatives and friends can come and go and interact with the family. Ma is not alone and can participate in the greater family function. She can live as fully as she can unto death.

However, each person is unique. Some may want to be near their books (that would be me), others near their sports, computer or electronic stuff, and others in the dining room, covered porch or near the bathroom or just back to the familiar bedroom they have slept in for years.

Most dying people want to keep as much independence and control over their lives as is possible. This being the case, certain modifications can be made in the bathroom and kitchen to help in this goal. While not permanent or radical changes, a bar to hold on to near the toilet or in the bath keeps things safe. Additionally, nonskid strips in the tub or any other place a slip could occur should be put down. Eliminate throw rugs or any carpet or rug that is not either attached to the floor or has non-slip backing. As well, remove any obstacles to a clear path that is frequently used. The frailty of the sick and dying make falls a clear danger that is easily prevented; moreover, they account for many deaths and one does not want to rush things. A chair for the tub is also a good idea so the person can sit and shower easily. An attachment to the shower head permits the patient to point the water where needed and makes bathing more of a pleasure than a chore. Make sure that the hot water is at its lowest comfortable setting so not to scald tender skin.

In the kitchen, if the person is wheel chair bound, moving food items to a lower shelf, labeling cupboards or putting the microwave within reach is a good idea. Make sure there is water available either bottled or that the sink can be easily reached and the faucets turned on and off. Also, small ramps over changes in floor thresholds greater than one half inch will help with the movement of a wheel chair; a simple rubber mat or strip might work.

Other environmental changes are simple, but deeply appreciated: Hand-held extender tongs, chairs with rollers (and brakes) or lamps that can be activated by touch and handy bags for knick-knacks, the remote control, books, little candies etc. can be draped over an armrest for easy access. Keep a large calendar visible so to keep track of time and stay in synch with the rest of the world. A large wall clock is also a good idea. Since many medications must be taken on a precise schedule and memory loss can be present, a programmable clock that chimes the time for meds can prevent overdose or not taking medication as directed.

Care must be taken that the room is well ventilated because respiratory problems are frequent in the dying process and also there may be idiosyncratic aversions to smells. An air purifier or humidifier might help. Good lighting is also a must. Easily accessible lamps or overhead lights add a soothing warmth when the sun goes down. Always keep a night light on. If the person is still mobile and uses closets in the house, install lights there, too. Never have open flames in the room; no candles or oil lamps. Oxygen may be in use and in any case, open flames can be easily tipped over.

Doing an inventory of the room and surrounding environment will bring to light many easy, simple and non-permanent changes that can be made to ease the burdens of the dying. It can seem exhausting to care for the dying at home, but it brings great peace to the person who is leaving this world and prevents or lessens any guilt for the loved ones staying behind who may think of what else they could have done.

It is very important that the person is not alone. If they are somewhat isolated, a baby monitor or a video cam setup can help them stay in touch. Additionally, it may be necessary that there is a telephone with big buttons and a volume control and an intercom function. If the patient is mobile, several phones may be useful. Ma sometimes gets on the phone and calls my brother when he is out in the garage; sometimes it is something as simple as she cannot find the remote control for the TV. If the person must be left alone occasionally, it may be necessary to have a security alarm service so a live person is available in case of emergency.

The television can bring a connection to the outside world. Now, with the multiplicity of channels to choose from, there is entertainment for all tastes. Some even go to church services over the TV. Also, with video conferencing capabilities and broadband connection the computer can connect the person in real time to anyone in the world. This can be a great uplifting gift if the there are family faraway, in the military or who simply do not have the means to come to the bedside. Music can be a great comfort. It may be soft classical or folk music or the favorite music from their youth. I recall a friend going out with the Grateful Dead playing in the background.

Emotional and spiritual support are crucial to a happy death. Things as simple as dressing the person in their favorite color or having that color for the bed spread or sheets. Sometimes flannel sheets are preferred over percale. New clothes can bring great comfort by acknowledging that the patient is “not dead yet”. If the patient enjoys flowers or plants, make them available. Ma very much enjoys looking at her roses on the front porch. They are still her roses.

The value of companion animals cannot be discounted. Ma is greatly consoled when Otto, the family corgi dog, sleeps at her feet. The sounds of birds chirping or the peace of a cat keeps the patient, literally in touch with living things and brings emotional satisfaction and peace of mind.

As the letting go process continues it is important not to let go of friends and visitors too soon. Most dying people, no matter how sick they are, welcome visitors and are thrilled that they are remembered while the world continues outside their immediate experience. Sometimes ground rules or structure needs to be set up ; e.g., calling ahead of time, so not to interrupt bathing or sleep time and so on. In other circumstances it may be okay for people to just drop in and is an appreciated surprise.

I remember when young Anthony was dying of AIDS. He had not spoken a word for about two weeks and was days away from death. A couple of us, his fellow parishioners, brought him Holy Communion. We took a tiny particle of the Bread and filled a syringe with water. Together, we turned to him and proclaimed, as he opened his eyes and they met ours, “This is the Body of Christ”. To our utter amazement, he came out of his foggy consciousness and said, “Amen!” and we all broke out into tears, witnessing this incredible testimony of faith from a dying man. It was the last word that he would ever say.

If guests, especially children are visitors, it is wise to keep any medications in a separate area and out of reach of small hands. Additionally, medications can be placed in a seven-day-container and a log kept of what is administered and when they are taken, particularly if more than one person is a caregiver. Moreover, when there is more than one caretaker, when one leaves and another arrives, it is very important to keep a log of what happened on one watch as attendance is transferred from one to another. Finally, emergency phone numbers of doctors, home health nurses and next of kin should be prominently displayed, so if a crisis occurs or death is imminent, important people can be called.

In conclusion, the central point of caregiving at this point is to address the dying person’s needs. It is important to assure them that they will be cared for and not abandoned and that people will not talk behind their back and will be honest with them and provide them with information that is accurate, timely and reliable.

All care and the provision for physical and emotional pain relief and comfort, is to be of the highest quality. It is crucial to understand the nature of pain and pain management, as it is the sine qua non of quality hospice care. Nociception, the perception of pain, occurs in different parts of the brain in a network often referred to as the pain matrix. This matrix determines the location, duration and type of pain (burning, throbbing or sharp) and triggers feelings of emotional distress. It does not distinguish between physical and emotional pain.

Pain is highly subjective. There are many ways to control pain: Anesthetics, analgesics, neurosurgical intervention as well as the use of music, massage and pleasant aromas. However, the most likely pain encountered is that of extreme pain that can be controlled with the use of opioid analgesics. Fears of addiction or overdose about the use of these types of medications need to be addressed so they do not interfere with proper treatment. The patient has a right to pain relief and to withhold it has severe ethical and moral implications. Failure to adequately manage pain prolongs suffering and can obstruct the path to dealing with the other existential concerns of the dying. Useless suffering serves no purpose; it does not build character or get you into heaven. Suffering is not required. Dying does not have to be painful! Ma is in no pain.

With pain under control, assistance is to be provided to rationally and without duress, develop and finalize documents related to terminal care and life support measures; for example, advanced directives or “DNR”, do not resuscitate attachments to medical papers. Decisions must be made in advance regarding artificial nutrition and hydration, cardiopulmonary resuscitation and mechanical ventilation. Such measures may only prolong the dying process until some organ or other body system fails. These decisions are highly influenced by cultural and religious beliefs.

Communication is to be kept open at all levels. The dying person must have permission to express their feelings, be it of affection, love and forgiveness or anger, resentments and dissatisfaction with their situation. Psychological symptoms of anxiety and depression need to be confronted and ameliorated. The dying person may begin to express fears about dying or suffering at the end or of being a burden to family or those caring for them. This may promote thoughts of suicide and they may want to talk about this. If they do, listen, but do not promise to assist in the desire to commit suicide. Let them know that to have these thought is not uncommon. Try to identify the source of these thoughts and see if they can be resolved.

They should also be asked about their preferences regarding their spiritual needs and funeral arrangements. Finally, the dying person should be given as much time and space that they need to tell their story, attend to unfinished business (Even Socrates on his death bed asked that a debt be paid that he owed.), plan for the distribution of their assets and generally have as much control over their situation as possible.

When it becomes clear that curative therapy is no longer an option, the sooner one comes home, the better. Even, if it is only for just a few days instead of weeks or months, going home is the most kind act one can do for the dying person to leave this world in peace, safety and comfort.

References

The Dying Process: A Guide for Caregivershttps://www.hospicefoundation.org/