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Through the Eyes of a Carer

Recognising the Signs of Death Approaching
(by Suzanne Hetherington)

How Long?

There are many times in a hospice nurse's day that the question"How long?" is asked. There are certain signs and symptoms that can help the caregiver and nurse anticipate when the process of dying has started or when death is imminent. While there are some common factors that exist in all deaths despite age, gender and disease process, it is important to remember that not every patient experiences each and every of the following signs or symptoms.
Suzanne Hetherington on her way to a home care visit with volunteer Panchanan Pandey

The presence of these "signals" listed below allows the nurse to anticipate the needs of the patient as s/he moves into the actual process of dying and therefore allows for communication with the family about what is happening.

Acceptance Issues

This is by far the hardest part of being a hospice nurse. Some families are more closed about the process and don't want their loved one to know they are dying. I believe, as do many of my contemporaries, that all patients know that they are dying; some just accept it more than others. Some patients are very open about dying and talk about death as if it's the natural thing to do... which it is.


The Signs: Recognition, Explanation and Solutions

The signs/symptoms of death approaching include: drowsiness, an increased need for sleep and/or unresponsiveness; increased confusion, an inability to identify loved ones; restlessness (pulling at bed sheets, having visions or a feeling of being uncomfortable); decreased socialization, withdrawal; a decreased need for food and fluids or an inability to swallow; a loss of bowel and bladder control; skin becoming cool to the touch or a noticeable bluish tint to the feet and hands, known as cyanosis or mottling; rattling or gurgling sounds while breathing; increased difficulty with pain control; and involuntary movements known as myoclonus.

When a hospice nurse arrives at a patient's home for a visit, it's usually the family that has noticed something different. They may not understand what is going on, but they do realize that something is different. Usually, but not always, it's the confusion and restlessness that comes first. A family member might say, "He was up all night." or, "He is talking silly talk. It just doesn't make sense."

If this is a new problem, the nurse will understand that some metabolic changes are now occurring and begin a thorough assessment. She may notice that hands/feet are now cold or pain medication wasn't given in a timely manner. At the end of the assessment, while the issue is still fresh, opening up a conversation about what sees vs what the family sees is very important. This could include a detailed explanation starting from the top of the head and going down to the feet and hands, explaining what is happening to the patient.

Showing the family what changes are seen by her and in a loving and kind manner, giving an explanation and possible suggestions to help with the patient's comfort, is very important for the hospice nurse. Medication can be given to control pain, to help with agitation and even to help sleep. Oxygen can be used for respiratory comfort and a different bed or mattress could be provided. It's important that the nurse has a suggestion or solution to the problems at hand as this allows the family to develop greater trust in her and feel more secure in knowing that their loved one will be cared for right up to the end.

Case Histories

Patient A was a 24-year old female who lived in India with a diagnosis of rectal cancer. Her decline was two weeks in duration. I knew from the first meeting that her family was aware of many problems she was having, however, they chose to retain the thought that she would get better. I spoke to her sister often and even though she understood what I was telling her, she chose not to translate this to her mother. The patient's main problem was difficulty in maintaining pain control due to the increasing spread of cancer. She experienced a loss of bowel and bladder control which was very upsetting for her, however her inability to sit up or stand was so exhausting that in the end she relinquished her efforts and remained incontinent. Her family provided as good a care as they could and never left her side.

Patient A had noticeable weight loss and had a decreased need for food or fluids. Of all the signs, this was what most troubled her mother. Education was provided at each visit regarding slower bowel sounds and nausea from eating, and the mother was advised to provide food and fluids only when the patient was hungry. For a mother, feeding her child is tantamount to her getting better. The mother of the patient chose not to accept her daughter "starving" and encouraged her to eat and drink water even within a few hours of her death.

Towards the very end, the patient would sleep for 12-14 hours per day according to her family, and when she was awake her sentences were sometimes "odd" and she appeared to be talking to no one in particular. She had cyanosis of the left elbow and her hands were always cool to the touch. However, when she had passed on she appeared very comfortable with a smile on her face. Her mother was very distraught and wondered why she hadn't got better despite all the chemo she had been through. She could see the weight loss and increased pain issues, but she had chosen, as did most of the family, not to accept it.

Patient B was a 74-year old male living in the United States. His diagnosis was leukemia. I first met him at his home with his family after coming from the doctor's office where they had just explained to him that he was terminally ill and that he would need hospice care now. He was very open to the idea of comfort measures only and to the support his family would receive. He was very quiet and did not talk much during our meeting. He did nod his head occasionally to show he understood what I was saying.

His decline was also two weeks in duration. At that point he was no longer able to climb the stairs to his bedroom and was sleeping on the couch downstairs. A hospital bed was provided by hospice and his wife placed it in the living room so family and friends could visit and have a place to sit. While he was no longer hungry and took only sips of fluids, his inability to swallow was creating problems for him. He developed "gurgling" sounds and oxygen was placed for respiratory comfort. He had a feeding tube that had been put in his stomach prior to hospice, so his wife was able to give fluids until his abdomen became swollen due to his loss of bowel sounds. He suffered pain in his legs and feet and was given morphine via a patch similar to the care of Patient A.

Loss of bladder function occurred and a foley catheter wad placed to decrease skin breakdown. His family was at his bedside at all times to anticipate his needs. He required the use of incontinence products. A hospice aide was provided to assist the family with bathing, turning and comfort needs daily. This was the hardest part for the family, to relinquish personal care to nursing staff. Discussion took place each visit regarding peri care (cleaning of the urinary and rectal orifices), bathing, etc, and even though, at first, the patient's wife stated emphatically that with the help of her children she didn't need anyone else, it was soon too much for her and she was able to accept outside help. The tension she had built up was relieved and she could now focus her attention elsewhere.

Had the above discussion not taken place or had the nurse chosen not to see this as a problem, then the patient's family would not have trusted in her care and the end result might have been very different. Our role as hospice nurses has to switch at some point from patient caregiver to family caregiver. The patient is following his path but it's the family who is left to do the living. They need as much compassion and care as the patient requires.

The Comfortable Death

In both instances, despite age, gender and location, each patient exhibited similar symptoms at the end of life. Religion also played a large role in their death. Patient A was Hindu. Her mother went to the temple everyday and prayed to God to cure her. Patient B was Mormon. His minister came to the house and prayed with him and elders from the church kept his family company. They brought food so the family would not need to worry about cooking and took turns sitting with the patient so his wife could get a little rest.

In the end, both patients were loved and cared for by their community and family. They both died peacefully at home with the help of hospice. The hospice nurse establishes an environment of trust, answers questions truthfully and lovingly, and helps give the patient a comfortable death in the home with family and friends at their side. This is hospice nursing at its best.

 

Regular Aromatherapy on Home Care Visits
(by Tapasia Keet)

Since the end of October, I have been visiting home care patients to give aromatherapy, mainly in the form of foot massage.

We use almond oil mixed with essential oils. This massage oil is donated to us by Mr Harlalka from Sugandhim, House of Aromatheraphy Products & Essential Oils in Haridwar.

Tapasia administering an oil massage
The massage works by relaxing and detoxing the body, and the results are different for each patient. Each situation is also different for me. I don't speak Hindi so I have to watch very carefully and feel what is right for the patient that I am with. During the massage, I see the face change, I feel the muscles relax, and sometimes tears are shed.

A simple smile on the face of the terminally ill breast cancer patient—who can do nothing but sit (even while sleeping) and wait for her suffering to come to an end—is heartwarming.

It is not easy to write about my experience because the feelings of gratitude and love that I have when I am working with these patients are impossible to put into words.

One patient who has a lot of pain and discomfort, and who cannot sit because of his rectum cancer, totally relaxed after his first massage. The next time I came to his home with the nurse, he laid down on the floor immediately, waiting for his massage. The whole family was sitting around us, but he closed his eyes and relaxed.

When I go on home visits with our nurse and driver, I can see the light that we bring. The medical care, the love and attention for the patient and their family makes their situation a little bit easier. Aromatherapy is a wonderful addition to this care. When massage is not possible for some reason, we provide oil and a diffuser. A few drops of lavender oil are put on each patient's pillow.

 

Hospice Care in Montreal
(by Amélie Julien)

Since 2004, I have been part of the care team at La Maison d’Hérelle which is a hospice in Montreal, Canada. In the last two years, we have received an increasing number of requests for admittance from people affected by both cancer and HIV/AIDS.

In 2008, 25% of our patients were diagnosed with cancer. When a person is diagnosed with cancer it is hard to accept because it means there is a severe risk to his life. For a person with HIV to receive such a diagnosis is a double blow, as he is learning for the second time that his life is hanging by a thread.

 
We easily observe the benefits of a hospice like Maison d’Hérelle for people who need end-of-life care. We provide a stable place to stay, good healthy food, medical, social and psychological support. We know that it’s hard for many people when they are sick and on their own, to be diligent about their own care. That is why we are there, to take care of those details and to allow them to concentrate on their own priorities and personal growth.
Amélie Julien at La Maison d’Hérelle
 
La Maison d’Hérelle is known for its knowledge about alternative approaches to medicine. Different approaches are offered to our patients, such as aromatherapy, massage therapy, art therapy and zoo therapy. We have an in-house doctor who intervenes when patients are unable to see their own family doctor. We have the privilege to witness the evolution of the patients and our constant eye on their situation helps us to identify when and how we are best able to provide relief.

Our patients have the opportunity to live in an environment in which they are respected in all the stages they pass through. We accept the patients as they are and try to follow their rhythm as much as possible. Instead of having a rigid framework within which everyone should fit, we try to adjust our framework so each person can find his own place in the house. That’s why we have a personal care plan for each patient, which is written with the patient and adapted to his own needs. The care plan helps the team to work together with the patient and ensures that the care given is informed and consistent. We have regular team meetings in which we share our observations and try to see how we can make patients feel more comfortable and to the best of our abilities, ensure that their needs are met.

We also give special attention to the family and friends of our residents. We always take time to answer their questions, to explain what they need to understand and to support them. Once they feel at ease, we include the patient’s close ones in the care that we provide to their loved one. The major task for us is to give them information about the disease and the nature of the end-of-life care. We offer psychological support too. By being a support to the family or friend, they have a better understanding of the disease and its implications, which makes them more receptive to the patient’s reality. This in turn improves the quality of life of the patient.

By staying in a hospice, our patients are able to focus on what is important to them, and we take care of all the other things that guarantee their comfort. We encourage them to actively participate in improving the quality of their life. We support them in doing what they are able to do and to stay autonomous for as much as possible and as long as possible.

The success of our hospice is based on our approach. We include patients in the decision making process as much as possible. We feel the solidarity and camaraderie, not only among staff members and volunteers, but also among the patients. It is not always easy, but the people in the hospice do their best to create a pleasant atmosphere by respecting everyone’s differences. We believe that those differences are a strength rather than a weakness. We learn a lot by living with difference. We learn about others but we also learn a lot about ourselves too.

La Maison d’Hérelle is truly a home for many people. We have people who have stayed with us that come back to visit because they miss the place. Others come back to do volunteer work or to join the team. When we pass by Maison d’Hérelle, we remember it is a hospice full of life, respect and dignity.

I hope that in future, more hospices will rise up to provide this kind of quality palliative care, especially in areas of the world such as India, where facilities for palliative care are few and far between. I trust that we can bring back human values like compassion and co-operation and that we can fight against the loneliness so often brought about by disease.


PATIENT'S STORIES
Cancer patients and their loved ones are invited to write to us about their views, thoughts and feelings. We will include as many letters, articles and stories as is possible in these web pages.

Please send your article to Nani Ma: nanima@gangapremhospice.org

 
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