When your loved one faces a terminal condition, your presence is very important to them. It’s very hard to know that your loved one will be leaving in the near future, and you need the strength to support them with careful and sensitive care. The last days and hours of life are a time of authenticity, sincerity, and the most important shared words.
Hospice care plays an important role in managing pain and symptoms in the late stages of illness. Each situation is unique, but a number of proven approaches can be used to keep the patient comfortable. Doctors may recommend certain medications, adjunctive palliative care, or complementary therapies to help with this period.
A hospice care team may include a variety of professionals to help both the patient and the rest of the family. Specialists in psychology, adaptation, spiritual care, social work, and other fields can join the multidisciplinary group depending on the needs of the individual patient in the last stages of their illness.
In addition to the hospice care team, there are several things that you can do to help keep your loved one in a comfortable state in a calm and loving home.
General recommendations for end of life care
Below are general recommendations for end of life care:
Be sure to communicate:
- ask a loved one what he/she would like, fulfill any actionable wishes; these memories will be important for you in your own future;
- ask the person if he/she wants to communicate with a spiritual representative of their faith;
- if you already had a frank conversation about death, then ask your loved one about the funeral wishes; perhaps he/she will want to leave orders for his/her things;
- give the person the opportunity to express their feelings;
- do not accuse them of anything, on the contrary – forgive and ask for forgiveness;
- do not insist on anything; do not impose your beliefs;
- do not interfere with communication with small children or grandchildren: this is important for both children and the outgoing;
- avoid inappropriate optimism, the words “hold on”, “you will get better”, “everything will be fine”;
- do not be afraid of pauses and silence: in silence, your loved one will begin to speak and say the most important thing;
- do not leave the dying person alone;
- listen to your feelings, share them while you have time;
- do not hesitate to talk about your love;
- speak calmly, try not to cry or scream;
- touching the person will strengthen your connection.
In the room:
- ventilate the room several times a day (but avoid drafts);
- maintain the air temperature that is optimal for the patient (people at the end of life can either sweat a lot or feel like they are freezing);
- use a humidifier (if necessary);
- turn on their favorite music; imitation of the sounds of nature (birds singing, the sound of the sea, etc.) tends to be create a peaceful ambience.
- harsh and loud sounds (door closing, a phone ringing, and doorbell);
- bright lighting;
- artificial silence – it can feel oppressive;
- fuss in the house;
- take care of the patient’s body;
- until the very end, moisturize hands, feet, face with cream and lotion (as needed);
- pay special attention to their needs concerning intimate hygiene;
- do not carry out complex manipulations (multi-step make-up, shampooing and conditioning, etc.) if unwanted;
- dress the patient in comfortable, light, and loose clothing made from natural fabrics;
- moisturize their mouth (with ice cubes, damp cotton swabs, etc.);
- wipe their eyes as needed.
Advance planning of care
It is impossible to predict how exactly events will develop in the final stages of a terminal disease. However, planning ahead can help reduce fear and uncertainty. This gives the family time to make decisions that align with its priorities and values. Hospice care specialists will prepare the patient’s family for different scenarios. Honest and open communication will help the patient’s family make informed decisions about treatment, taking into account their benefits and consequences.
In the last stage of the disease, medical procedures can pursue one of two main purposes:
- Life-prolonging medical care
- Medical care aimed at maintaining comfort
Hospice care focuses on the latter to maximize the quality of life for your loved ones last days.
Medical interventions at the last stage of the disease include:
- Surgery or radiation therapy to treat symptoms caused by the tumor
- Making breathing easier with oxygen therapy or mechanical ventilation
- Medical nutrition (enteral nutrition)
- Intravenous fluid administration to maintain water balance in the body
- Blood transfusion
- Administration of antibiotics to fight infection
- Administration of anticonvulsant drugs
- Chemotherapy to prolong life
The hospice care specialist can help the patient’s family think about other important decisions about end-of-life care.
Using the recommendations, the patient’s family will be able to choose an action plan that will help the patient to fully live the last days. The family can choose from the following options:
- Spend the last days at home
- Be with friends and loved ones
- Fulfill a cherished desire or fulfill an important goal
- Create special memories
The importance of hospice care
Working with a hospice care professional offers a number of benefits to the patient’s family in the late stages of the illness, both in the short and long-term. A hospice care specialist will help the patient’s family:
- Have a difficult conversation
- Understand possible scenarios and make informed decisions
- Help you avoid distancing yourself emotionally and avoid missing the opportunity to spend time together, the memories of which will last forever
- Pay attention to emotional and spiritual needs
- Find the strength to deal with medical, financial, and everyday issues